Friday’s Fave Five

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 It’s Friday, time to look back over the blessings of the week with Susanne at Living to Tell the Story and other friends.

I’m a little late to the party – it has been a busy week! Here are some of my favorite parts of it:

1. Springy days. The weather has been just perfect this week, not too hot or too cold. It’s been rainy and windy today, but I accept that it’s gotta do that some times. 🙂

2. Longer days – or more sunlight to the day, at least. It’s rejuvenating.

3. A productive week. I won’t bore with with the to-do list, but I got some things done I needed to and some things I wanted to. Some weeks I’m not sure where the time goes, but I don’t seem to have much to show for them, so it is nice to get some things accomplished.

4. Timely arrivals. I had ordered something for Jim’s mom’s weekday caregiver’s birthday and paid a little extra for it to get here today. By mid-afternoon I realized that “today” might not mean before she left at 5. I prayed it would get here before she left but was mentally preparing myself that I’d just have to give it to her Monday after her birthday. But it came today at 4!

5. Forty years of being a Christian. It just hit me last night that this year is the 40th year since I believed on Jesus Christ as my Savior. Unfortunately I didn’t write down the exact day and I don’t remember what time of year it was, but I do know how old I was. What a blessing to have known Him and His forgiveness, love, and care for so long. My testimony is here. I encourage you, if you don’t know Him, or you’re not sure, take time to find out more about it. This link explains more about becoming a Christian.

“Whoever has the Son has life; whoever does not have the Son of God does not have life.” I John 5:12

“And this is eternal life, that they know you the only true God, and Jesus Christ whom you have sent.” John 17:3

Jesus said to him, “I am the way, and the truth, and the life. No one comes to the Father except through me.” John 14:6

Adventures in Elder Care: Caring For a Parent at Home

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Eldercare

Some years ago I heard that one of the most delightful older ladies in a church we used to attend in another state had developed Alzheimer’s and that her son and daughter-in-law were caring for her in their home. One time when we had occasion to go back and visit, I asked her daughter-in-law how caring for her mother-in-law was going or what it was like. She smiled beatifically and said, “It’s our privilege!” I could only think, “Wow…she must be a better Christian than I am, because I think that would be hard.” It’s not that I wanted the nitty-gritty details, but I did want to know how God had given her grace for this ministry in case I ever had to do the same.

Our only experience with having a parent in our home for an extended time was when my dad came years before and got sick and ended up in ICU. I believe he was with us for about six weeks. He was not a Christian then (though he became one during that time), and he had lived alone so long that he had forgotten the give and take that there has to be with a number of people under one roof. I don’t mean to dishonor him by saying so, but he was quite cantankerous, especially when Jim was not home. The tension was so great that Jim said afterward we would never have a parent live in our home.

In my post on making decisions for elderly parents’ care, I mentioned that there are some relationships that thrive better when there is some distance. I share the experience with my dad mainly to say that I do understand it can be stormy to have a parent in the home, especially when age and dementia remove some the natural inhibitions. Some elderly parents can be abusive, and we heard enough even in assisted living places to know that bringing some parents home would be quite stressful. I wouldn’t even begin to know how to advise someone in such a case, especially when there don’t seem to be any other options, except to pray for a lot of grace.

In my mother-in-law’s case, we had been talking ever since we moved to TN about moving her home, because now we had a house with no stairs, and we had a room that would work well for her care (some of you may remember my talking about Jim finishing off a room from our L-shaped garage. My son and daughter-in-law lived there for a while when they first moved here, and ever since we had used it for Jim’s office and as a guest room). There was a small drop-off from the house to the garage for which we’d need to build a ramp, and we’d need to figure out shower issues. I was intimidated at first, partly because of my own health issues and partly because of the level of her needs: at the nursing home she had medical help right there. She is what the therapists call a “total assist”: she can’t walk, feed herself, go to the bathroom on her own, turn herself in bed, etc. At home it would be more complicated, and it would have a major impact on our lives. But as she seemed to sink lower and lower, we really felt the best alternative was to bring her home. So we got the room ready, the social worker at the nursing home set us up with renting a hospital bed, air mattress, and a Hoyer lift for transferring her. She also arranged for physical therapists, an occupational therapist, and a once-a-week RN visit, plus they had a couple of home health agencies they could recommend. Medicare wouldn’t spring for a Broda chair, but my husband found one on Craig’s list in a town 3 hours away for a good price.

So we brought her home at the end of July. Jim told me later he really thought we were bringing her home to die, because she had been at such a low place in the nursing home. But she has been thriving under one-on-one care. She had gotten down to 90 lbs. in the nursing home but now is well over 100 lbs. We have a home health aide here most of the day from M-F, and from 8-2 on weekends. The one who is here through the week is great: she has a lot of initiative and does a lot with her, makes sure to turn her every two hours to avoid bed sores, and they seem to get along great. She and I work together to give her a shower twice a week (actually she does the showering part, and now that we have done it several times, I’m more able to help with getting here ready for it and helping afterwards).

The physical and occupational therapists and nurse’s visits only lasted a number of weeks (about six, I believe.) The therapists told us that because she had been left contracted for so long in the nursing home, we would likely never get her straightened back out again, but doing some exercises with her would help stave off further contracting so we could dress, bathe, and move her.

The advantages of bringing her home have been:

• She’s thriving under one-on-one care. She gets more attention, time with meals to make sure she is eating adequately, stimulation of conversation and interaction with others.
• Since she has the same caregivers, they get to know her and her “quirks” as opposed to a high turnover in other facilities and having different people cycle through.
• We don’t have the long drive to see her (it had been about 20 minutes one way).
• We can see her more often through the day.

There are, of course, disadvantages, and I don’t share these to complain but rather just to be honest with anyone else reading:

• You can’t go anywhere without working around having someone else here with her.
• Caregivers cost $17 an hour with the agency we work with (more on that in a moment), so we can’t use them much more than we already use them. Consequently we rarely get to go out as a family to eat or to an activity.
• Caregivers are a big help, but the downside is having a stranger in your home (especially for an introvert like myself). Though none of the caregivers we have are strangers any more, it still feels awkward sometimes. I don’t want them to feel like they are servants who have to stay in that one area of the house: they do come into the house to do her laundry (I felt awkward about that at first, too, thinking I’d rather do it, but there is not that much for them to do since she sleeps a lot, so I relented), bring her lunch tray back, get water, go to the bathroom, etc., and everything except the bathroom involves coming through the areas where I usually am. Our regular weekday caregiver is very much a gregarious extrovert who I am sure has a hard time being in a room all day with someone who doesn’t say much, so she comes over just to chat sometimes. It’s funny – if I am up and around doing something, she doesn’t usually say much, but if I am at the computer, I guess it looks like I am “not doing anything,” so she is more inclined to come over and talk then, when that’s the time I would least like to be interrupted because I’m often trying to think through a blog post or writing a newsletter. But I’m supposed to be hospitable, so I try to be, and usually I don’t actually mind, but it’s just hard mentally to get some things done. There is one kind of freedom of having someone here and knowing her needs are being looked after; there is another kind when the caregivers are gone for the day and I feel like I can relax.
• When I am alone with my mother-in-law, there is often a certain amount of tension or pressure just in wondering if I should be over there with her if she looks like she’s awake (we have a video baby monitor). If I go in to feed or change her, I usually stay in there with her until she goes back to sleep, but often I still feel like I should be in there all day when it is really not necessary since she does sleep quite a bit.
• Changing her every two hours to avoid bedsores includes the nighttime hours, which Jim has taken on.
• If one of the regular caregivers can’t be here for some reason (going out of town, illness, etc.), there is not always a ready replacement, or we might not choose to use one because we’d spend so much time showing the new person what to do that it wouldn’t be a help to us.

I mentioned working with a home health care agency. The agencies who provide medical care (nurses, therapists) are different from the ones who provide regular day to day care like feeding, changing, etc. If we hired someone individually outside of an agency, we could probably pay them less while they would get more (I think of the $17 an hour we pay, they only get 10 or so). But we decided to use an agency for several reasons: if there is a problem with a caregiver, we can call the office instead of having to deal with it; if we don’t like how someone works, we can ask not to have that person again (which has only happened with one person); if the regular person can’t come we do have the option of having the agency send someone else out (there is one lady who is good as a fill-in); the agency checks out their background and skills before sending them out.

I haven’t mentioned finances: I can’t say much knowledgeably about them because my husband has dealt with that aspect. But I do know that neither Medicare nor insurance pays for home caregivers or assisted living: they did pay for the first 100 days in a nursing home (after a 3 day hospital stay) as long as there was some kind of skilled nursing going on (physical, occupational, or speech therapy). Once the therapies stopped, Medicare stopped paying. They did pay for the therapists who came to the house. They do pay for some of the equipment, such as the hospital bed. Actually they pay for the rental of it, and if we use it for I think 12 or 13 months, then we own it. They paid for a regular wheelchair but not the Broda chair (which she needs since she can’t sit up straight). They would not pay for the air mattress unless she currently had a bedsore (even though she’s had one before and we wanted one to help prevent another.) If her savings and monthly income were to drop to a certain level, then she’d have access to Medicaid. She receives Social Security, a small pension, and a VA benefit, which have not been enough to cover assisted living or nursing home or home health care costs, so we have had to dip into the savings from the sale of her house.

In fact, her savings has gotten down to a level that we feel we need to cut the weekday caregiver’s hours back. The weekend lady is here from breakfast til 2 p.m. since Jim is home on weekends, but the weekday lady we’ve had here til 5 p.m. To try to manage my mother-in-law’s funds better, we’re going to cut the weekday lady back to 1:30 p.m. We’re hoping that doesn’t mean she won’t be getting enough hours and will have to look for another situation: that’s one reason we haven’t cut back before now.

I’ll have to admit that even though I agree that we need to take this step, and though I can handle caring for her in the afternoon now, I don’t feel as beatific as my friend I mentioned at the beginning of this post. People act as if we’re doing something noble by caring for her at home, but it doesn’t feel so noble to spoon pureed food into someone’s mouth and clean up the other end, and there are some days (just like when a new baby is in the house) where it feels like that’s all you’re doing, even though you know it’s not. As I mentioned in talking about the “empty nest” recently, when your kids are grown and gone, you miss them, yet there is a side of you thinking, “maybe I can write that book now, or learn to quilt, or travel” (for some people – I am not a traveler myself). When a parent is in the home, some of those aspirations have to go back on the back burner.
But if this is God’s will, this is my ministry for now. In fact, the very night we decided that we would need to cut back on the caregiver’s hours, thereby increasing my own, God was so good to have these verses in my evening reading for Daily Light on the Daily Path:

Distributing to the necessity of saints. Rom. 12:13

David said, Is there yet any that is left … of the house of Saul, that I may shew him kindness for Jonathan’s sake? II Sam. 9:1

Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world: for I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. Matt. 25:34-36, 40

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward. Matt. 10:42

To do good and to communicate forget not: for with such sacrifices God is well pleased. Heb. 13:16

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister. Heb. 6:10

Another verse that often comes to mind with my mother-in-law is I Thessalonians 5:14b: “comfort the feebleminded, support the weak, be patient toward all men.” And I Corinthians 13 about love applies, too, as well as the verses I mentioned in my first post about our obligation to care for our parents.

I do need to look at it as my friend did, that it is my privilege to care for her. She does make it easy: she is sweet, rarely complains (except when someone’s hands are cold 🙂 ), and smiles and appreciates any little thing that is done for her.

Practical helps

I probably should make this part into a separate post as this is getting long, but I think I prefer to keep it all together.

I feel more confident about being able to care for her myself now after having observed and helped the aides with showering, changing, and moving her. I had been afraid of lifting her since my balance isn’t always stable, but with the Hoyer lift there is really no lifting involved. The aides started out using a draw sheet to move her from side to side or up in bed, but now we pretty much just use a large waterproof pad that is always underneath her.

Since she’s been home we’ve discovered a plethora of information available online (including videos on everything from feeding to using the Hoyer lift to repositioning) as well as resources. Just Googling ‘hospital gowns” and “waterproof pads” has led us to sites with those and other supplies. When she was having trouble staying in position in her shower chair, we tried using a gait belt, but that was a little too firm. I Googled “shower seat belt” and found just what we needed.

With other needs, Jim’s skills have been wonderful. I mentioned the shower situation. The therapist had recommended a sliding seat where the patient sits on one end and then is slid into the bath/shower area, but Jim’s mom wasn’t stable enough to do that. We have a step-in shower in one bathroom, so Jim built a platform in the bottom, so it was level with the step, and then a ramp leading up to it. We put her in her shower chair in her room, put a towel over her, and roll her backwards into the shower, then roll her back to her room afterward.

photo

We do put a towel under the ramp to absorb sprays and drips from the shower.

Transportation was another problem. Right after she moved home she needed to be established with a doctor since she was no longer under the care of the ones in the nursing home. Therapists, nurses, etc., make house calls, but not doctors. 🙂 There is a transport system here that can take patients in wheelchairs to appointments, but they don’t accommodate the Broda chair. So for that visit we had to prop her up in her wheelchair, be ready an hour before the time we needed them to pick her up, and be ready to wait an hour after being done with the appointment for them to come back and get her. Jim and the caregiver accompanied her, but it was a very long day, and there was no way to reposition her like we’re supposed to do every two hours to avoid pressure sores. So Jim found a ramp that would attach to the back side of our van, took out the back seats, and found that if he lowered her chair into almost a full reclining position, he could get her into the van, then raise her up into a sitting position. Then he had clamps to secure her chair into the place where the seat that he had removed usually plugged in, and he was able to secure the seat belt over her into the next seat. It’s hard to explain without photos and videos, but it worked very nicely and gives us more leeway in being able to take her places.

My man job since she has been home has been figuring out how to prepare a balanced diet that can be pureed. An immersion or hand blender works better than the big regular-sized blender (the big one works well but it leaves you with a bunch of bulky parts to wash). You can actually probably puree most anything if you add enough liquid, but some things work better than others (we even tried a tuna fish sandwich once. It did puree, but she didn’t care for it. :)). Almost any casserole purees well. Most vegetables we’ve tried work well, too (except corn and broccoli. They do well in casseroles but not so well by themselves, although creamed corn does fine). Canned vegetables and fruits work well. Mandarin oranges just turn into juice. Meats are probably the hardest. Soft meats like Salisbury steak do well. We keep a jar of prepared gravy on hand for that kind of thing. We add something called Thick-It if a food ends up too liquid. Usually we just puree whatever we’re having, but when we’re having things that would not puree well (like pizza and salad), we keep a few frozen and canned items on hand for her. Of course, things like pudding and ice cream that are already soft work great. We do supplement her diet with Ensure. It is probably not as necessary now that she has put on some weight, but we felt it was vital when she first came home and her weight was so low.

I hope some of this has been helpful. Let me know if you have any questions. As I’ve said before, I am certainly not an expert, but if I can share something I have learned along the way that will be helpful to anyone else, I’d be glad to.

Of course, the bulk of our experience has been with a parent who is pretty much bedridden. I’ve had friends who have brought parents home who are able-bodied but with Alzheimer’s or who are in good condition both physically and mentally but for various reasons can’t live alone any more. That would be a different set of adjustments, but it would include the need to incorporate a new person as an everyday family member rather than a guest and to make yourself available to that person. If you’ve had experience along those lines, please feel free to share in the comments.

In my next and probably last post in this series, I’ll discuss some ways to help parents as they age.

Book Review: Bleak House

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Bleak HouseIt’s hard to summarize in a line or two what Bleak House by Charles Dickens is about, as there are several story lines going on at the same time. In fact, it is a little hard to get into at first because, like A Tale of Two Cities, different strands of the whole are mentioned individually at first and not woven together until several chapters in (as opposed to David Copperfield, which starts at the beginning with David’s birth and progresses from there.) SparkNotes helped a lot with the early chapters, although I’d advise against reading the character list or overview until after you are well into the story due to spoilers (ditto with the Wikipedia article on the book). I followed the individual chapter discussions and analysis on Sparknotes.

The point of view switches back and forth from a third person present tense narrator to a first person past tense narrative of Esther, one of the main characters. From what little I’ve read Dickens was praised by some and criticized by others for this. The two viewpoints do give us the advantage of two perspectives and I enjoyed hearing both.

One strand of the story is the case of Jarndyce vs. Jarndyce which has been languishing in the Court of Chancery for years. Dickens based the Chancery on the real-life one, and the opening foggy scenes are symbolic of it. One note said the Jarndyce case was based on a real one that went on for 53 years. We’re not really told what the case is about except that the inheritance of some of the characters are tied up in it. John Jarndyce himself has given up on it and wants no more to do with it.

Another strand of the story involves bored, cold, haughty Lady Dedlock, whose demeanor, we discover, hides a secret sorrow and then a secret fear.

Another involves Esther Summerson, an orphaned girl who was raised by her aunt until the aunt dies, then sent to school, then asked by John Jarndyce to become a companion to his niece, Ada, who had become his ward as well as a nephew, Richard. Esther shares the narrative at points, and one of the interesting things about the writing is how her voice seems faltering at first (she claims she is not clever) and then gains confidence as she goes on.

Ada and Richard fall in love, which pleases Mr. Jarndyce, but he urges Richard to choose a profession before the relationship goes any further. Richard is affable and likable but doesn’t have any clear interests. He tries apprenticing at a few different professions before ending up in the military. However, after visiting the Chancery one day, he gets caught up in the Jarndyce case, and it becomes the focus of his life, despite his guardian’s warnings against pinning his hopes on the outcome of a case that could go on for years.

Another strand involves the poor of the town, particularly a mother, Jenny, whose baby dies, and a boy named Jo who is apparently homeless and constantly being told to “move on.” Others involve a somewhat flighty lady named Miss Flite who has been waiting for years for her own settlement and the noble soldier George Rouncewell.

One of Dickens’ skills is creating memorable characters, and there are some four dozen in this book. There is Mrs. Jellyby, caught up in the cause of Borrioboola-Gha in Africa while severely neglecting her own family. Inspector Bucket was based upon a real Scotland Yard detective and is reputed to be one of the first detectives in English literature. Mr Skimpole, whom I did not like, was also based on a real person (who evidently did not take kindly to the portrayal.) He calls himself “a child,” especially in business or money matters, but something about him seemed not quite right to me, which proved to be the case. He did not have the same endearing qualities as the feeble-minded Mr. Dick of David Copperfield.

There are different kinds of love portrayed – romantic, familial, friendship. If I can say this without giving away a major plot point, the Dedlocks certainly don’t seem the epitome of a warm and loving couple, but his response late in the novel showed he loved her deeply. I particularly loved the Bagnets and his calling her “the old girl” and asking her to tell his opinions. One of my favorite scenes was her birthday when the family was making her dinner while she tried to subtly signal to her daughters to add more of this, less of that, and nothing was done the way she would have done it herself, but she endured with grace out of love for them and their efforts.  There are a couple of mysteries, including a murder. There is a case of spontaneous combustion, which Dickens was severely criticized for including, but he countered that at the time he wrote it was thought to be a real phenomenon. There are different people affected by the Chancery, mostly negatively. There are observations of social injustice. There is sadness and joy and humor. There are a lot of secrets causing varying degrees of sorrow to those involved. There are a variety of reconciliations, a couple of them sorely delayed due to pride and shame, and the most heartbreaking is the one that did not occur but could have.

Esther’s story did end up where I hoped it would. One of the oddest things in the story (minor spoiler alert) was when her guardian proposed. That seemed a little creepy to me, but he releases her from the engagement later on. Another favorite scene is after he proposes, when Esther is in her room brushing her hair, determining to make him very happy, but crying, for reasons which she doesn’t quite know – or at least doesn’t tell the reader, but the reader guesses. It’s not a favorite scene because she is crying but because of Dickens’ way of showing what was going on in her heart without spelling it out.

I have heard the 2005 BBC production is really good and would like to see it some time. Here is a trailer for it:

But as it is over 8 hours long, I might have to wait for a heap of ironing or some sick days or summer break when there is nothing else on.

I listened to the audiobook narrated by Peter Batchelor but dipped into the hard copy at points and read its introduction and afterword as well.

Some say this is Dickens’ best; some disagree. I think it is masterfully written and I enjoyed it a lot (especially the last third or so of it), but I liked A Tale of Two Cities and David Copperfield much better. Dickens’ books usually improve upon rereading, though, so next time I visit Bleak House I might enjoy it even more.

(This will also be linked to Semicolon‘s Saturday Review of Books.)

This also completes one of my requirements for the  Back to the Classics Challenge hosted by Karen at Books and Chocolate.

classics2014

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Laudable Linkage

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Here are some thought-provoking reads from the last week or so:

How to Beat That Bad Mood.

Middle-agers Need Older Women Too.

Raise a Man.

Salvation in a Dementia Ward, HT to Challies.

Motherhood or Singleness: Which Is More Sanctifying? Short answer: whichever one you’re called to.

8 Things Not to Say to Your Aging Parents.

How to Write a Book in Your Spare Time.

7 Reasons Why I Stop Reading a Novel by author Jody Hedlund, whom I have not yet read except on this blog.

Getting Upset About the Wrong Things in Disney Movies and The Cold That Bothers Us both give thoughtful insights into Disney’s movie Frozen.

Finally, I couldn’t resist sharing with you something we noticed during Sunday breakfast. Apparently one of the biscuits was grumpy, or woke up on the wrong side of the pan or something. 🙂

Grumpy biscuit

Happy Saturday!

Friday’s Fave Five

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 It’s Friday, time to look back over the blessings of the week with Susanne at Living to Tell the Story and other friends.

Here are some of my favorite moments from this week:

1. An Irish Tenors concert! We first saw them on a PBS special years ago and have been listening to their music ever since. I was surprised to see in Sunday’s paper that they were going to be in town, in the beautiful Tennessee Theatre to boot. Tickets were a little pricy, but Jim found a Groupon deal to get them half price. His mom’s weekday caregiver was willing to come Saturday night, so everything worked out nicely. All in all it was a wonderful evening.

2. Stopping by the Orange Leaf for frozen yogurt afterwards. They have a dairy-free orange flavor that is really good. I hope they expand their dairy-free options!

3. Having the Will Galkin Evangelistic Team at our church this week. We weren’t able to go to all the services since we don’t have a caregiver for Jim’s mom in the evenings, but we did enjoy the ones we were able to go to.

4. Seeing a couple of young people from our old church in SC. One is my middle son’s age and is on the Galkin team. He’s probably my favorite person to hear sing. Then his sister was able to travel in to see him Sunday morning, and we got to visit with her a while, too.

5. Seeing Frozen with the family. I think we may be among the last people in the country to see it, but we enjoyed it. Now I finally know what that song is about that I keep seeing parodies of, LOL!

Happy Friday!

Adventures in Elder Care: Assisted Living and Nursing Homes

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Eldercare

As I said in my first post in this series, when we were making decisions for my mother-in-law’s care, it helped me to read of other people’s experiences, so perhaps this will be of help to others. I hasten to say, though, that these are our experiences alone: they may or may not be typical and they are not meant as professional or authoritative advice.

If you foresee that you will probably need assisted living services for yourself or a loved one, the best recommendations will likely come from people you know who have also used them. Then either through the Yellow Pages or an online search, research what it available in your area. Most will have a web site for further perusal, and most are happy to set up an appointment for you to talk with the director and tour the facilities. Some good questions to ask them are listed in Seven Questions to Ask When Searching for Assisted Living and Assisted Living Community Evaluation Checklist.

There are a wide variety of assisted living facilities. My grandmother’s was basically an apartment complex for the elderly. She had her own kitchen and did her own cooking, but there was a nurse on site all the time who regularly checked blood pressure and such. Most facilities have common meals together in a dining room and provide housekeeping. Some have different levels of care, including hospice and an Alzheimer’s unit. Most provide activities for the residents; some even have “field trips” to area attractions.

Those in need of assisted living vary widely as well. Some are able bodied and sound in mind but no longer have the energy to keep up with a home. Most are in some state of decline, either physically or mentally or both, and others are confined to wheelchairs or have full-blown Alzheimer’s.

The key, then, is to find the best fit for your loved one, hopefully at a reasonable cost and not too far away. Realize that no situation is going to be perfect, whether your loved one stays with you or in a facility, but hopefully you can find a workable situation for all involved.

Let me say here that I would not recommend putting a loved one in a facility where there are no other family members nearby, especially if they have any kind of dementia. Even if they are near close friends or an active church family, those people will not have the same position of authority if any problems arise. Wherever you place them, you need to visit them often, not only to encourage them and show them love, but also to see that they’re being cared for well. Do not put them into a facility and assume they are being well taken care of and forget about them for months at a time.

I mentioned in my first post in this series about decisions that we had come to the conclusion that my mother-in-law needed to be in a facility. As we discussed the situation with other siblings, it became clear that moving her to live near us was the best option. Jim’s sister would be moving away from their town in ID, so placing his mom in a facility there would not be an option because there would be no one there to check on her regularly. She rarely complains, but to a fault: many times in the past we wouldn’t know there was some problem going on until we came to visit. When we asked why she didn’t let us know, she’d say, “I didn’t want you to worry.” So we felt if she was in a facility away from everyone, we’d never know how she was really doing. Other family members had careers and commitments, I was the only stay-at-home member at the time, our family could be involved in her life, the facilities in SC were much less expensive than in CA where Jim’s brother lived, so, all told, moving her East appeared to be the best solution.

The rest of the family lives out West, so they all gathered for Mom’s 80th birthday for a kind of farewell get-together. Jim flew back to help her get ready and to fly with her back East. Thankfully they did not have to close up the house at that time. His sister took care of that later when we got ready to sell it.

She handled the whole transition with a lot of grace. I can’t imagine leaving a home and church family of 35 years for such a major move. She did get understandably teary at saying good-bye, and one of the hardest parts was leaving her dog behind. She also got teary when her house was sold. But otherwise she has done quite well.

There was an assisted living place just a few minutes from us, and it worked out well for her to be there. It was divided into four smaller homier buildings, as opposed to a bigger, more institutional facility a little farther away. One of us visited her nearly every day, we brought her to the house often for meals and Scrabble and even to my youngest son’s basketball games, took her out to dinner a few times, brought her to church, etc. Being in a facility actually gave her a measure of independence that she enjoyed and faces to see besides ours. She was not inclined to participate in many of the activities: she usually preferred to stay in her room and read. But sometimes they’d talk her into going, especially if there was a church group singing. This facility had a bookmobile that visited at regular intervals and would even bring books to her room so she didn’t have to go rummage around for them. She was evaluated by a physical therapist and provided with a much-needed walker.

She was in that place for a year, until we had to move to TN because of my husband’s job. He valiantly staved off moving as long as he could, but finally we had to. She was in one facility here for a year, until her care needs reached a level they did not feel they could manage, and then in the “Memory Care” unit (not so much because of her memory but because she needed a higher level of care) of another facility for about a year and a half until she went to the hospital and then to a nursing home.

Each assisted living facility that we had experience with had different levels of care. Level 1 was usually minimal assistance needed: the resident could walk to and from meals, take care of their own bathroom needs, etc. Level 2 and 3 provided more assistance as needed, and of course, the higher the level of care, the more expense. We concluded that assisted living places were fine as long as you didn’t need much assistance: as Jim’s mom’s abilities declined, and the level of care she needed increased, the quality dropped off.

There were things we liked about assisted living:

• Access to physical therapy
• Regular checking of blood pressure, weight, etc.
• Camaraderie with others in the same situation. An older person can get a little depressed initially about the need to use a walker, etc., but when they see many other managing with one, it helps. They also see people in much worse conditions than themselves, which helps to put their own situation in perspective.
• Building friendships. My mother-in-law did not benefit from this as much because she preferred to stay in her room and read, but even with just going to meals, there were people who greeted her, were glad to see her, etc. It did enlarge her world a little bit.
• Family dinners. Two of the three facilities had regular dinners or events where family members were invited. It helped to get to know families of some of the other residents.
• We could decorate the rooms however we wanted (short of painting them), hang pictures on the walls, etc. to make it more homey.
• There were a few CNAs who were real pleasures, who were dedicated and kind and attentive.

But there were things we didn’t like as well. Most of these facilities were understaffed and the workers overworked and underpaid. We knew not to expect everything to go 100% like we’d like: no place is going to be perfect. But we didn’t expect to regularly have these kinds of problems:

• The only time we were away for an extended time was for my son’s wedding in another state. The day before we left, I found a broken picture frame on the floor – Mom was still using a walker then and must have accidentally knocked the picture off from where it was sitting. I picked up the big pieces of broken glass, went to the office, explained what happened, and asked if someone could vacuum up the smaller slivers. When we came back a week later, they were still there. Even without someone coming to clean that particular mess up, you’d think someone would have vacuumed the room in a week’s time.
• Food left on her face, from actual bits sticking to her face to a whole chin smeared with sauce, often enough to make red places on her face.
• The hearing aid was often left out, or put in without a battery, or the battery was put in backwards, causing her ability to hear and communicate to be almost nil.
• Food or poop (sorry for TMI, but it happens) would be left under her fingernails.
• When she began to lose the ability to sit up straight, we would come in to find her bent completely forward or bent to the side at a 45 degree angle. We purchased a shoulder harness that helped her to sit upright, but they said they weren’t allowed to use it because it was classified as a restraint. We could understand that, but we felt they could have straightened her up from a bent position and tucked pillows on either side, etc. Just looking at her should have alerted someone that she was extremely uncomfortable.
• One aide would give us grief every time we told her Mom needed to go to the bathroom. Then for a while, every time we would come in, she’d rush over and tell us that she had just taken her to the bathroom, and she’d had “a good poop.” Funny how no matter what time of day we came, she had just taken her. 🙂 The deal was, she wanted to take all the residents to the bathroom on her timetable. But of course they can’t all schedule their need to go to wait until she came. If, while we were visiting, Mom said she had to go to the bathroom, we’d call for an aide, and this one would question Mom about whether she really had to go, or make little remarks loud enough for us to hear when she took her in (“You don’t need to go? Well, we’d better try.”)
• Regular taking of supplies by the aides from one resident’s room to use for another. Granted, sometimes a resident would run out of Depends or wipes, and their family member couldn’t get there that day with more (often they didn’t let us know she needed some until she was completely out, even if it was 10 p.m.) But instead of “borrowing” from other residents, we felt the office should have kept a supply on hand that they could use in emergencies, and either incorporate it into the costs or charge the account of the person needing them. This was particularly rampant in one facility. Not only did wipes disappear at a fast rate, but Mom’s plastic cups, gait belts (used to help her stand up and to transfer her from wheelchair to other chair or toilet, etc.), and even her shower chair were used for other people, even though her name was on all of her things with black Sharpie markers. Clothes disappeared to who knows where.
• Some aides would not be gentle in moving her. For a long while, she could move and help them in their movement of her, but she’s stiff and arthritic, and it would take time. Some would jerk on her arm in ways that hurt her instead of taking their time and going about it slowly and gently.
• Some aides kept running conversations going with each other and did not interact with her at all while they transferred her or took care of her needs.

My husband would talk to the office about some of the problems, in a kind way – he’s not an angry ranter and raver. They were always very sympathetic and promised to make changes, but either that didn’t filter down to the aides, or they didn’t heed it, or things would improve for a while and then go back downhill. We did understand that if we came just after a meal, they might not have gotten to her yet to clean her up. Most of the time we would just take care of the issue and not say anything about it.

I mentioned the different levels of care. In the second facility she was in, as her abilities declined, a couple of aides began to complain about the extra work she required. We learned then that they had a rule that each resident had to be able to get out of the building on their own within 13 minutes during a fire drill. We hadn’t heard of that before. When Mom failed to do so, we were notified that she needed to move right away. No warnings, not 30 days, not even a week’s notice. We talked to the county ombudsman but found that assisted living facilities are not very regulated.

At the next place, we asked if we were going to run into the same problem when Mom declined to a new level, and they said no, she should be able to finish out her time there, and they could even arrange hospice care when it became necessary. She was there about a year and a half when she developed a serious UTI. She was prone to them, and her urine had a certain odor when she had one. When we suspected she had one, we asked the nurse at her facility if they could get a urine sample and then get her started on antibiotics (which they could do at this facility: they had a nurse practitioner who worked with them). For various reasons (among them their being out of toilet “hats” which they used to collect samples), they did not test her for a UTI until a week after we first mentioned it. They started antibiotics, but by that time the infection was rampant, and she was very sick and was taken to the hospital. While she was there we were told that they would not be able to accept her back. So we had about a week’s notice to find and arrange for her to be transferred to a nursing home.

We had talked to a couple of nursing homes before her last move and were told that she could be put on a waiting list, but it was rare that anyone was admitted through the waiting list: they usually were admitted after a hospital stay. Medicare’s regulation was that they would pay for 100 days of skilled nursing in a nursing home after at least a 3 day hospital stay. Mom was in the hospital for about a week, so that requirement was met. Physical therapists, occupational therapists, and speech therapists were all working with her, so she met the skilled nursing requirement.

When she went into the hospital, she had to be out on pureed foods, and she has not outgrown that. We never did figure out why. We thought maybe the depth of her illness as she battled infection caused her to be weaker, and then moving and adjusting to a new place and people was traumatic. But she has not regained the ability to eat regular foods without choking. All we can figure is that as she has gradually been losing muscular abilities (walking, going to the bathroom, feeding herself, etc.), this was a further loss of muscular strength.

The nursing home was the one facility we had been most afraid of, having grown up seeing people in them staring vacantly from wheelchairs or beds. But in many ways she received the best care there at first. They were very gentle in their handling of her. We didn’t have to bring up posture issues: they were on top of that. We learned there was such a thing as a Broda chair, which reclines and has little side pillows built in, so she could now sit in a wheelchair without being stuffed and strapped in. We had always thought it was sad, before, to see people in wheelchairs in the hallway, but now we understood that being out in the busier areas does get them out of their rooms for a bit, and it seemed stimulating to Mom to people-watch. Plus some people would speak to her as they passed by, giving her a bit more interaction than she would have had in her room.

One down side to the nursing home was that her living space was extremely tiny, and everything looked really run down. But a couple of the best aides were there, and one nurse, though seemingly gruff at first, ended up being one of our favorites.

But each facility is only as good as its weakest worker. Jim walked in a couple of times to see an aide feeding her, but watching TV while doing so and only interacting with Mom by shoveling food in. We asked them if they would turn off the TV while feeding her, make sure her hearing aid was in and working, and talk with her a bit while they fed her: we felt those measures would improve her eating. Some of them did. Then, after just a little while she would put up her hand to say she’d had enough. When Jim fed her and she did that, he would give her a drink, let her rest a bit, and then offer her more, and she would eat more. But the aides had the next person to get to, so at the first sign she was done, they’d move on to the next person. Even with regularly getting Ensures and high-calorie shakes, she got down to 90 lbs.

Then she developed a bedsore and couldn’t get into her wheelchair because of where it was, so she had to stay in bed for weeks while it healed. They had stopped physical therapy when she “plateaued,” but were still supposed to be putting soft splints on her arms and legs to keep her from curling up into a fetal position. But somewhere along the way that dropped off. So those weeks while she was in bed, she ended up curled up into a ball, and seemed lower than ever. When we would go to see her, she would often be sleepy or groggy, so we had no idea if she knew we had come, and she must have felt like she was spending endless days alone. People in the facility only saw her to change her Depends and feed her.

We had discussed often over the previous months whether we should try to bring her to our home. At this point we concluded that if we didn’t, she was going to waste away to nothing. In fact, when we first brought her home, Jim assumed that she didn’t have much time left, and he wanted to bring her home to pass away rather than having it happen while alone in her room there.

In my next post in this series I’ll discuss the ins and outs of having an elderly parent at home.

What’s On Your Nightstand: March 2014

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What's On Your NightstandThe folks at 5 Minutes For Books host What’s On Your Nightstand? the fourth Tuesday of each month in which we can share about the books we have been reading and/or plan to read.

Feb. seemed long for a short month: March has seemed short for a long month. Of course, there’s about a week of it left, but for WOYN purposes, it’s time to discuss what’s on our reading agendas.

Since last time I have completed:

Made to Crave: Satisfying Your Deepest Desire With God, Not Food by Lisa TerKeurst, reviewed here.

Walking From East to West: God in the Shadows by Ravi Zacharias, reviewed here.

Farmer Boy by Laura Ingalls Wilder for my Laura Ingalls Wilder Reading Challenge and for Carrie’s  Reading to Know Classics Book Club, reviewed here.

The House Is Quiet, Now What? Rediscovering Life and Adventure As a Empty Nester by Janice Hanna and Kathleen Y’Barbo, reviewed here.

I’m currently reading:

Crowded to Christ by L. E. Maxwell

Bleak House by Charles Dickens via audiobook

The Little White Horse by Elizabeth Goudge for Carrie’s  Reading to Know Classics Book Club for March. I need to step on it with this one!

Wednesdays Were Pretty Normal: A Boy, Cancer, and God by Michael Kelley

Made to Crave Action Plan Participant’s Guide by Lysa TerKeurst and Ski Chilton (which is a different thing from the Made to Crave Participant’s Guide, as I discovered after ordering the wrong book…) It is a follow-up to Made to Crave, and the Proverbs 31 Ministries site has been posting the videos in the Action Plan series and going through this book.

Next up:

The Great Divorce by C. S. Lewis

My Man Jeeves by P. D. Wodehouse for Carrie’s April selection.

The Book of Three by Alexander Lloyd (pub. 2006), first book in the Prydain Chronicles

Other bookish posts this month included one on censorship of YA literature and rereading.

As always, happy reading!

 

Laudable Linkage

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I’m here again today with my almost weekly round-up of interesting reads from the last week or so:

Gospel-Centered Reduction: Slighting the Spirit. There has been something bothering me about the term “gospel-centered” being used as an adjective on just about everything in Christianity in recent years, but I couldn’t quite articulate why. This article touches on some of the reasons.

Coffee With Facepalm Jesus Calling, HT to Bobbi. The various problems with portraying Jesus as saying things He wouldn’t say, from memes to cartoons to Jesus Calling.

Fred Phelps and the Anti-Gospel of Hate.

9 Things We Should Get Rid of to Help Our Kids.

31 Days of Purity: The Throne of Grace. I especially appreciated the paragraph by Lambert in the middle about the difference between condemning self-talk and confession.

This Mother Tore Off labels and Nurtured Her Son’s Hidden Genius.

Soldier Finds Lifeline in Letter Exchange With Vermont Author, HT to Sherry. I have never read either of these authors but want to now. I espcially liked this: “I needed that reminder that there was still hope and still beauty in the world. At that time in my life there was none. There was nothing except guns and fear. I was really not at all sure that I was ever going to get out of that place. This book gave me a little bit of beauty at that time, and I needed it. Not the way I need a new app for my iPad. I needed it to keep my soul alive.”

Threads: Loved this: “Every great story tells in some part The Great Story. Each truth revealed helps us make sense of our world. And through each tragedy, comedy, and fairy tale, the Truth is woven through the fabric of our being.” I don’t know that I’d say that about every story – I’ve read some awful ones with little redeeming value – but overall, yes, truth even in fiction points us to the ultimate Author of truth.

Happy Saturday!

Friday’s Fave Five

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 It’s Friday, time to look back over the blessings of the week with Susanne at Living to Tell the Story and other friends.

Some weeks you have to really search for five favorite things: some weeks you have enough to do a couple of “fave fives!” Here are some highlights from my week:

1. Getting a haircut. Nothing radical, but I had either been unable or unmotivated to get to it for weeks and was way overdue. My hair cooperates much better at a certain length. And I was able to snip at a couple of areas I didn’t like as well and have it all turn out ok – that doesn’t always happen. 😀

2. Putting winter clothes away even though we’re still having some cold days. I do still have sweaters and jackets in the hall closet. 🙂 Those dark, heavier things that are so cozy in the fall and winter just seemed oppressive to me now. Love the look of my closet with springy colors! I used to work in a fabric store and loved the transformation when we got the store ready for spring and put away the wools and darker fabrics.

3. The first day of spring! I had thought, for some reason, that it was Sunday, so I was delightedly surprised when I went on Facebook and say people heralding the first day of spring yesterday.

4. Job offers for my youngest son. He’s about to finish up his associate’s degree in May. In one of his classes different groups are doing projects for businesses in town, and in a meeting the man they are working with, he told Jesse he’d like for him to send him his resume. Of course, that might not lead to anything, but it was encouraging! Then his school held a job fair this week, and Jesse visited booths and passed out resumes. One in particular seemed to hold some promise.

5. Getting rid of a bush I’ve always disliked that was right by the front door. I don’t know what variety it was, but it looked like a fir tree collapsed in on itself. I’ve never liked it and asked about getting it removed, but my husband wanted to keep it there. It’s been dying out (no, I didn’t help it along 🙂 ), and he finally removed it last Saturday. Now we get to decide what to replace it with!

Bonus: Not getting the snow that was forecast one day this week. Right now my weather apps are showing that we might get some next week – hopefully it will pass us by then, too.

Hope you’re having a great week!

Adventures in Elder Care: Decisions

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Eldercare

A few years ago I happened upon a couple of blogs dealing with being a caregiver for elderly parents, and they were a help to me even before we got to that point. Those blogs are no longer active, and for some time now I have been thinking of writing some of the experiences and things we learned along the way with my mother-in-law in the hopes that they may be a help to someone else.  I had hoped to contain everything I wanted to say in one post, but it got to be way too long even before I finished, so I thought I’d better divide it up into sections.

Scripturally and morally we’re obligated to care for our parents when they can no longer care for themselves. In Matthew 15:3-6, Jesus says to the Pharisees, “Why do you yourselves transgress the commandment of God for the sake of your tradition?  For God said, ‘Honor your father and mother,’ and, ‘He who speaks evil of father or mother is to be put to death.’ But you say, ‘Whoever says to his father or mother, ‘Whatever I have that would help you has been given to God,’ he is not to honor his father or his mother.’ And by this you invalidated the word of God for the sake of your tradition.” (This is from the NASB, which I think gives the clearest meaning to this passage.) God did not honor their gifts supposedly to Him at the expense of neglect of their parents. In instructing the church concerning the care of elderly widows, Paul writes in I Timothy 5:4: “But if any widow has children or grandchildren, they must first learn to practice piety in regard to their own family and to make some return to their parents; for this is acceptable in the sight of God,” again from the NASB. Both it and the ESV say “children or grandchildren”; the KJV says “children or nephews.” But the idea is that our first responsibility and ministry is to our family. The “sandwich generation” is not a new phenomenon: people have always needed to care for their parents and grandparents in some way. Besides the “obligation” of such care, we should be glad to “return the favor” of caring for those who cared for us for so many years.

Most people really don’t think seriously about what to do with a parent who can no longer live alone until they get to that place. Admittedly you can’t really make a decision until the time comes, because it will depend on the family’s life circumstances and just what condition your loved one is in. But it is good to do some research and have some discussions before you have to make a decision in a crisis.

I would say to anyone nearing retirement age that, as much as we don’t want to think about losing our independence, we have to face the fact that that day will come to all of us. It’s good to look ahead, prepare advance directives, talk to your children about your wishes and financial state, etc. We could even start reducing the amount of “stuff” we have squirreled away in attics or sheds before we get to the place where we don’t have the energy to deal with it so our kids won’t be faced with that chore.

It often seems as if other people see that an older person is having trouble living alone before that person realizes it, but I would make every provision for them to remain in their own home as long as possible. Most people wouldn’t relish the change from private home to a dorm or hospital type setting where anyone can come into your room at any time unless they are extremely gregarious, and many would feel burdensome moving in with their adult children. Some folks I’ve known have hired some household help to come in a couple of times a week; I’ve known some who rented out a room to a college student whose responsibilities around the house offset their rent (some degree of housecleaning, taking care of the lawn, perhaps some cooking, etc.)

The main reason for moving a parent out of their own home would be safety issues: the danger of falling, of forgetting to take medicine or taking too much because they’ve forgotten they already took it, etc. Even still, necessary changes need to be discussed and urged upon the parent without running roughshod over their wishes and feelings. It’s usually better to plant the seed that we need to start thinking about the future long before the need actually arises.

In my mother-in-law’s case, she wasn’t taking any medicine that we needed to be concerned about. We were all concerned about her living alone after her husband passed away. She lived 2,000 miles away from us but had a daughter and grandkids nearby. When my husband visited a couple of times, he noticed the housekeeping was declining and the dog had the run of the place (probably for companionship. They’d always had dogs, but they had never been allowed on furniture or to have free reign in the house, but now every piece of furniture was covered in thick dog hair.) He flew up to ID to accompany her to our home in SC and back for a visit to our house since we didn’t think she could travel alone, and while there he took her on a tour of an assisted living facility “just to see what it’s like.” She said it was nice, but she wasn’t ready for anything like that yet. Just about the time we felt like we needed to gently insist that she needed to consider moving, her daughter became available to move in with her. That gave everyone a reprieve from having to make any changes for a time. I don’t believe her daughter was ready, mentally and emotionally, for her to move to a facility yet, either. They did well together for a time, but then my mother-in-law began having some falls, and one time could not get herself up until her daughter got home from work. Additionally, her daughter began having some back trouble and could no longer help her with things like getting out of the bathtub. They both finally came to the conclusion that the time had come for a major change.

The next step, of course, is trying to figure out what that change should be. My husband and I discussed the possibilities many times as did my husband and his oldest brother long before this day actually arrived.

There are several things to consider when deciding whether to move a parent into your home or an assisted living facility:

1. Housing situation. Not everyone has the space to include a new adult addition, or the house might not be conducive to someone with physical problems.

2. Availability of other family members. It’s easier to bring a parent into your home if you have some kind of support system than it is to do so alone.

3. Finances.

4. Mental ability. If the elderly parent has Alzheimer’s or mental confusion, someone would need to stay with them all the time, and even a family with a stay-at-home member might not be able to manage that between errands, school obligations if there are school-aged children in the house, etc. I know some handle this by hiring someone to stay with the elderly parent a certain amount of time each week.

5. Level of care needed. There might be some situations in which the older person needs physical or medical care that can’t be given at home.

6. Relationships. Some older people will always see their adult child as a child, and won’t follow instructions about medical care (e.g., medicines), food, etc., but they would take such instruction from medical personnel in an assisted living situation.

7. Personalities. We might be loathe to admit this and we might think that every family relationship should amicable, but in real life that is just not the case. Some relationships prosper with a little bit of space for each party.

8. Safety. Particularly Alzheimer’s or some forms of dementia in advanced stages may cause some patients to physically strike their caregivers when frustrated or angry even if the patient would never have done that in earlier years.

9. Socialization. Assisted living could provide the mental stimulation of interacting with others and participating in the activities there, and it might encourage folks to know there are others who are going through the same things she is.

10. Independence. If a person is not capable of being alone, mentally or physically, for short periods of time, it would be hard to bring them into the family home unless someone else in the family can be home all the time, or the elderly person is able physically to go with the family to their activities. It might seem odd to list this as a factor when a person going into assisted living seems to be giving up their independence. But in such a facility they actually do get to make some of their own decisions and schedules to a degree and have their own living space. Some would feel that if they lived with their children they would be an imposition (even if the family is glad to have them), and they are more comfortable being on their own as much as they can be.

In our case, the biggest factor was that our home was not conducive to my mother-in-law’s needs. We had a split level at the time, and she could not handle the stairs safely. The other major factor was that we still had kids at home, one of whom was not driving yet, so our lifestyle involved a lot of taking kids to school, practice, and activities as well as errand-running where we couldn’t leave Mom at home alone. A friend who takes care of her mother-in-law with Alzheimer’s takes her with along with her to her granddaughter’s outings and school activities, etc, and she does fine, but my husband’s mother wasn’t physically capable of that and probably would not have been interested in that, either. She was very much a homebody, and even when her own kids were home, she didn’t go to many of their activities. Socialization was a smaller factor: I almost hate to even use that word because I know it is leveled as an unfair charge against home-schoolers has been a lack of socialization, and most of them get plenty of social interaction and don’t really need to be put into a classroom of people the same age to get it. But we  knew if my mother-in-law lived with us, we would be her whole world — she wouldn’t feel the need to or have the desire to interact with others besides surface greetings at church. Too, some of my own physical issues made me unsure I could help with hers: in fact, when she visited, I inadvertently hurt her shoulder trying to help her out of the tub.

My husband had been researching the nearby assisted living facilities and found one with more of a homey rather than an institutional feel just a few minutes away from us. In the next post in this series (probably next week) I’ll discuss some of our experiences with assisted living and nursing homes.

Disclaimer: This series is not meant as professional or medical advice. It is merely based on personal experiences and offered as information and encouragement.