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.