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‘Going downhill so fast’

I got a sense today of how stressed I really am, presumably as a result of Mom’s disease progression. I was walking my dogs and came upon a young couple at the end of my street with their newly adopted dog. All the dogs said hi, and we chatted and walked in the same direction down the street. I was having trouble placing them, and I asked if they lived in the house Amy used to live in. And the husband said, “We live right next door.” They were my next-door neighbors, and they have lived there for months. I apologized about 10 times. They were very cool about it, but I just took them a bottle of wine to try to explain that I’m obviously having trouble with focus and attention. That it was not them; it was me. It has been a long time since I’ve been that embarrassed.

Sundays are bound to have that effect on me for as long as Mom survives, because I am committed to feeding her lunch. I did today. I had a hard time waking her up when I arrived, and I asked an aide what the secret was to waking her for her meal. “Cold water first,” she said. Sure enough, having a glass of water lifted to her lips prompted Mom to wake up and prepare to eat. She had a couple of coughing episodes while eating, and the aide said there’s a chance Mom’s diet will be changed to soft foods that are easier to swallow. She was able to eat today, but it did take her a long time to clear each bite. She was serene most of the time, but knitted her brows from time to time when she tried to talk. I spoke in assuring tones and showered her with compliments and kisses. I took her hand at one point and she smiled and gave it a slight squeeze. I told her she can relax. She should not have a care in the world.

When I popped in on the program area Thursday before my quarterly care conference, I found Mom asleep and covered with a blanket. The aide currently assigned to Mom – they rotate every few months – said hello, and said, “She’s just going downhill so fast.” She has seen a lot. I wondered if this is a rare way for the disease to progress.

Mom, unresponsive whenI stopped in for a brief visit.

Mom, unresponsive when I stopped in for a brief visit.

At the care conference, I finally got some information about what’s going on with Mom’s changes. I had received a call a week or so ago about a blister on Mom’s foot – it turns out it was a vascular blister, meaning Mom’s poor circulation led to a wound, essentially. While she had been placed in a traditional wheelchair when she became a fall risk, she had trouble staying upright. So the staff put her in a chair that can tilt backward, started Mom on the diuretic Lasix and padded her legs and feet to support better circulation. I could feel the difference in her calves – her skin is less taut. I did mention that no one had ever called me about the transition to a wheelchair and the nursing director apologized.

She has lost 7 pounds, probably mostly fluid from her legs and feet. She is very withdrawn and has her eyes closed most of the time. She may or may not be sleeping. The activities director said she had spent about half an hour with Mom recently, and Mom did open her eyes. Mom also seems to respond to having lotion applied to her hands and arms. I said that sometimes I feel like I annoy Mom by constantly touching her, but the lotion can soothe the nature of the touch as well as provide a pleasant smell for the patient. Something to consider for future visits. Everyone agrees that Mom is a good eater, and they said that’s a good thing. “Is it, really?” I asked. They knew what I meant. But for patients at this advanced stage, the nutrients can be helpful in sustaining the quality of the skin.

Mom is now screaming again when the aides are giving her care – a shower, or changing her disposable underwear. But based on how little she moves when I spend time with her, I assume that’s the only way she can fight back. She can’t take a swing or kick anyone. And she doesn’t seem to have any words. She used to say “I hate you” to staff.

I asked if a rapid transition like this means progression will continue to be rapid. Not necessarily, the nursing director said. She has transitioned from one stage to another. How long she remains in this stage is anyone’s guess. I said I’m worried that she is fretting or in some distress. The staff members don’t think so. She may express what looks like frustration, but it’s likely that she has no awareness of actual emotions. That is comforting because I really don’t want her to fret. I just want her to be able to rest, and feel at ease, and not have a care in the world.

No survivors

Sometime next year, scientists will launch two large studies testing the preventive effects of experimental anti-amyloid drugs on two populations: an extended family with a rare genetic mutation linked to early onset Alzheimer’s, and older people at higher genetic risk of developing the more common late-onset form of the disease. It’s a huge undertaking. The drug trials and overall prevention initiative are described in more detail here.

I heard about these upcoming trials during a webinar late last month hosted by the Banner Alzheimer’s Institute in Arizona, the lead organization behind the studies. It’s one thing to design drugs that act on troublesome plaques in the brain and show their promise in animal studies and cell cultures. It’s another thing altogether to convince people – especially healthy people – to participate in research that can determine how those drugs work in humans.

Hence, the webinar for bloggers, to help raise awareness about the need for research volunteers in Alzheimer’s prevention trials. To this date, we don’t know what causes Alzheimer’s or how to prevent it. We know plaques and tangles are found in the brains of Alzheimer’s patients, but are they instigators or consequences of the disease? And there are lots of hints suggesting that what’s good for the heart and bones is also good for the brain, but no proven drugs or behaviors have been identified to definitively fend off the disease.

To help address this human subject recruitment problem, the institute has created the Alzheimer’s Prevention Registry, which matches researchers with volunteers willing to participate in clinical studies. I signed up for the registry last year and encourage others who are interested in research, or Alzheimer’s, or the greater good, to do the same. It’s easy and available here. Adding your name to the registry does not obligate you to do anything else: It just means that under specific circumstances and after you give permission, you are willing to have your contact information shared with a researcher who can then begin the process of determining whether you are eligible and available to participate in a given study.

The webinar was hosted by Jessica Langbaum, the principal scientist at Banner. In addition to outlining the statistics associated with Alzheimer’s (5 million+ Americans affected, sixth leading cause of death, 1 in 10 adults care for someone with the disease), she said two things during the webinar that really struck me.

She noted that high participation in the registry could send an important signal to federal funders that more money is needed for Alzheimer’s research. So far, 44,000 people have signed on. The registry’s creators would love to see that number grow to 100,000. “There are no survivors to talk about the importance of research,” she said. “We have to do it for them.” I’ve known all along that Mom’s illness is a fatal, terminal condition. But I had never thought in terms of advocacy, that no one can say: “I survived Alzheimer’s thanks to research.”

Along those same lines, Dr. Langbaum made reference to a highly visible survivorship campaign that long ago captured the public’s attention: the pinking of America that takes place during October, Breast Cancer Awareness Month. Well, November is Alzheimer’s Awareness Month and National Family Caregivers Month. Purple is the color representing the Alzheimer’s visibility campaign. And Dr. Langbaum, reflecting my sentiments exactly, said, “I hope someday the NFL isn’t just wearing pink in October. Maybe players will wear purple during November.”

Wouldn’t that be something.

[In the interest of full disclosure: I will receive compensation from Banner Alzheimer’s Institute for participating in the webinar and writing about the registry.]

In the news

The Alz center was in the news last week for a day or two. Apparently police were investigating a single case of alleged abuse of a patient by a staff member. A news report about that case led a woman whose husband died at the center to file her own police report about injuries he had when he died that a hospital physician described as unusual.

My reaction is that I am not alarmed. I am hopeful the family members of the residents who ended up with unexplained injuries might have been mistaken – that the injuries, at least in one case, could have been self-imposed by the patient. Or that maybe another patient caused the problems. But I am also not delusional. I know that there are bad apples out there in ALL professions, and that the actions of these bad apples should not harm an entire facility or institution’s reputation.

What did bother me, but didn’t really surprise me, were the viewer comments posted on the TV news station’s website after the story aired. I often read comments – I am interested in other people’s opinions, for some reason. But I should really stop it. The Internet has been kind to me in many ways – this blog, for instance – but it has invited so many irrational comments by people empowered by their anonymity to say the cruelest and most thoughtless things. And I get really riled up about it, which is why I should really stop reading comments on news sites.

I read all 106 comments on the website after the first report. So many people are quick to complain about nursing homes – those with experience and those without. There is so much judgment out there, and SO much ignorance about long-term care, and especially about how different this particular nursing home is from others. One commenter said the place should be shut down – and to that person, I ask, will s/he take in my mom, then, and provide her with 24-hour specialized dementia care? Also among the comments were a couple of notes from a woman from support group who had her husband at home for years before moving him into the Alz center in August. She briefly said she thought the care at the center was fine – excellent, even – and that she is there every day to see what it’s like. She used her actual first and last names. And more than one follow-up commenter accused her of being an Alz center staff member fraudulently posing as a family member. The nerve of some people. I have a feeling she doesn’t really care. I thought about posting under my own name that she is a real person, and also voicing my support for the center. No matter how compelled I feel to participate, though, I just can’t bring myself to engage with people who obviously don’t give a damn what a person WHO ACTUALLY KNOWS WHAT IS GOING ON AT THE CENTER thinks or knows for a fact.

Now, if there is an abuser on the staff, I certainly will be distressed to find out this is the case. But I trust the leadership of the center to do the right thing in the event that this turns out to be the case. I know many staff members by name and many others by sight. And I see how they act when no one is likely to be looking. They are gentle and loving with the residents for the most part. And they are working constantly. I think people who do this work are generally regarded as low-skill workers because they don’t need advanced education to be nursing aides. Perhaps that is the case. But at the Alz center, they have to have a heart. And I know that most of them do.

That darn cat

Well, today was a two-fer. Mom called again at about 4 p.m. to report that the cat was missing. She sounded pretty distressed. She even said, “I’m distressed.” So I told her I would come check it out. I had heard this story before, and the last time, by the time I arrived, the cat was in her apartment and I assumed she had just lost track of him. I had to get my things in order at work so I could just leave and not plan to return. So I called Mom at about 4:15 to check on the situation, hoping that by then the cat would have appeared before her.

No such luck. So I told her I’d be right over.

When I arrived, Mom was pacing around in front of the building in her raincoat. I was stunned – she was really focused on my arrival. And she had probably set off concern among the facility staff, who might have feared she was trying to escape herself. We went to the apartment, and I looked in the cat’s usual spots – on the bench by the window, on the bed, in the closet. No cat. I looked under the bed and the couch. I began to be concerned. This is one fat cat so he’s not easy to hide. He also had never been much of a hider, unlike his sister, who recently died, and who ran for cover anytime I visited. With no cat in sight, we went to the receptionist to see if anyone had reported seeing the cat. Nothing. Mom and I walked around, and she muttered things that might be meaningful, about an area where dogs go. I thought perhaps there is a little courtyard for the little dogs living there to use the bathroom. But there wasn’t any obvious place. We went up a floor and looked around. I looked around the apartment thoroughly a total of three times before I gave up on that. I told Mom to go to dinner and told her to just wait and see, that the cat would have to turn up.

As I was leaving, the activities director happened by, and she said that once before, Mom’s cat got out and visited another apartment at the far end of the hall. So she and I scouted that apartment while an aide checked across the hall. No cat. We ruled out the neighbor across from Mom, who had come out to go to dinner and said nothing about the cat. Then we tried the next door neighbor’s apartment. The activities director walked in, and there was the fat beast, just sitting in the living room. I ran after him, and he was easy to retrieve from under the bed. He is too fat to move swiftly.

The activities director told me as we were returning the cat to Mom’s place that Mom had once carried the cat into the dining room with her. I was suspicious that she was doing inappropriate things, like letting him out to take a walk or trying to carry him to activities in the lounge. But the dining room – well, I’m not sure what she was thinking. Thankfully, this neighbor is quite sweet. When I told her what had happened (she was already at her dinner table), she thought it was amusing and told me not to worry one bit. I appreciate that. Mom said she might faint from the good news.

I asked if the cat might get kicked out because of this. The activities director said no, this was really nothing. Happens with some frequency. I need to keep that in mind when I worry to facility staff – they have probably seen so much. Mom might be a challenge, but she’s not the worst resident they’ve ever had. Not yet, anyhow…

No drama

And then there are days like today. I haven’t talked to Mom all week. This can be a good sign, because she usually thinks to call me when she needs something. Or it can be a bad sign that she has forgotten she can call me anytime. So I called this morning and she sounded pretty peppy. She is doing fine. She would like some more cat food. She never likes it when there is an apparent shortage of cat food and she seems to have her own internal gauge of when the supply looks low. I can take care of that – just a quick visit to the vet and delivery at my next visit to Mom’s. I told her I’d bring a new bag over in a day or two. “Well good, that makes me feel better,” she said. And when there was nothing else to discuss, she was ready to hang up and go on with her day. And now I can peacefully go on with mine, as well.

Errands

Mom called today. She is out of disposable underwear. I swear, I need to learn to buy LOTS at a single run to the store. That would be a lot easier if stores were properly stocked with her size, extra large. So, I have a lunchtime visit to Target planned, then a swing by her facility. It’s on days like these that I buy some huge, salty portion of food for lunch and then feel sort of gross the rest of the day. It’s as if I already feel fairly bad, so why not take that to the next level, as they say?

I also discovered today that I have been double-counting a certain annuity fund of hers for which I routinely receive two statements. I get one quarterly statement from some outside annuity firm, plus the sum is included on a monthly statement from her bank. It was just today that I realized they are one and the same. Hence, she has thousands of dollars less than I thought. And, this means I have another lunchtime errand scheduled next week, when I have to go to the bank to transfer that annuity into checking so I can write enormous monthly checks for her assisted living care.

Today is not a particularly good day.

Alzheimer’s in fiction and in real life

I’ve been watching “Away from Her,” in which the beautiful Julie Christie plays a woman with Alzheimer’s. It’s not quite finished – I keep getting interrupted. But so far, I am not convinced by her portrayal. Of course, I am an expert now, or so I think… But really, I’m an expert only on my mother’s disease, and how it began, and what it’s like now. And though I’ve read quite a bit about what sicker Alzheimer’s patients are like, I can really only guess what might happen from here. I wanted to like this movie. I do think it’s pretty good. I relate, no surprise, much more to the husband in the movie. He suffers quietly, but he gets frustrated, he looks at her and expects normalcy to come out of her mouth. And that’s what is most difficult for me to accept in this movie – Julie Christie speaks complete sentences. Everything she says makes sense. She recognizes in her friendship with another man that with him, she’s not confused. And she barely recognizes, or opts not to recognize, her husband after only 30 days in a facility. I don’t buy that at all. He is, after all, part of her long-term memory and not just her recent memory. I’m interested to see how it ends – who knows, I might come around to be more forgiving. I’d like to read the story on which it’s based.

In real life, I visited Mom today and was pleased to find her looking adorable. Sundays can be tricky – Mom’s apartment is cleaned on Monday and she is showered on Tuesday. So by Sunday, both her apartment and her appearance can be pretty rough around the edges. But the apartment looked pretty good, save for the litter boxes, which I scooped. And I found Mom already in the dining room, with fairly neat hair and one of her favorite animal-print shirts on. She also had bright pink pants on, which I loved. They are spring pants, but I was tickled by her choice of such a dramatic color at this time of year. She also was wearing her pink Crocs – one of her two pairs of Crocs. And light blue socks. And a bracelet with multiple colors, including a bit of the same bright pink as her pants.

I think she is still dressing herself, though I see evidence that it might be getting more difficult for her. She’s always got stray socks lying around in odd places, and sometimes in her purse, so I am used to that. Today, she had a pile of clothes neatly stacked on her bed. I THINK the person who washes her clothes also puts them away. So Mom might be retrieving them from the closet to select something, or she might be stacking dirty clothes on her bed. It’s hard to tell. I have decided not to worry too much about this. She has plenty of clothes and I see evidence that she wears different outfits (though she definitely sometimes wears the same outfit for a few days). I once hung up a series of outfits for her on her bedroom door, and the next time I visited, they were gone. I took that as a rejection of my help. And that’s OK. As long as she can do things independently, I want her to do them. She tends to not like to be told what to do, and I can’t say that I blame her for that.

Wandering

I’ve heard and read about wandering by Alzheimer’s patients. A coworker of mine once found a wanderer at her door in the wee hours. I know there is potential for it, but I have tended to think Mom won’t wander because she has led such a sedentary life. It’s just not in her to go walking around. However, that is the old Mom. This Mom still tends to be somewhat lazy, a trait that my spouse and others who have married into my family tease us about. We all like to be horizontal, as in stretched out on the couch, sleeping late, going to bed early, napping on weekend afternoons, sitting at every opportunity. It’s just our way, and Mom seems to be the source of that tendency in all of us. But the Alzheimer’s brain is so transformed that very few of Mom’s original tendencies can be relied upon to last. Thankfully, the laughter is still there. And she is happy to take a nap once or twice a day. But I observed her tonight a bit and think she is also driven by habit, by what little recall she has. She sees a door, and she opens it. And walks through, even though she has no destination in mind.

We were in her apartment. I popped in just briefly to supply her with underwear before a major winter snowstorm blows through. I was eager to get back on the road. I think she was confused by the fact that I did not take off my coat. We sort of danced around each other in the apartment, me stocking her dresser while she talked a little bit about the cat, and about how dinner was late tonight. I told her I needed to leave and she opened her door and walked out into the hall ahead of me, not really knowing where she was going or what I might be planning. She likes to walk me to the door when I leave, so she came toward the lobby with me, but then she seemed to be drawn back to her apartment – back through the door. It could also be that she is confused sometimes about where her apartment is. The other day, she peeked out her door to see whether people were going in to lunch yet, and the next thing I knew she was trying to enter an apartment across the hall. That quickly, she had forgotten where she lives.

I also think, at least in Mom’s case, that a quick departure is one way to deal with difficult emotions. A couple of weeks before Christmas, the nurse called me at work to say Mom had stormed out the front door of her assisted living facility. Staff had a hard time coaxing her back inside. An hour or so later, Mom emerged from her apartment with her coat on, so the nurse asked me to come and be with Mom to see what was going on. By the time I got there and asked her why she had her coat on, Mom said, “Because I’m cold.” But I heard stories about another resident, one of Mom’s friends, having a really bad morning as well. And it occurred to me that the two probably had a fight. And because Mom is very child-like, stomping away was probably the only solution she could think of to end the fight and cool down. This is a guess, of course, because Mom had no memory of a fight, either. That single departure scared the facility administrator so much that he asked me to stay with Mom for two nights to ensure she wouldn’t try another escape. Sure enough, she was a perfect angel. No escape attempts. No weird behavior. Mostly, she just wondered why I was around all the time. I thought after that that I was in the clear, that it was a one-time thing. But I’ve heard from receptionists that Mom has slipped out the front door a time or two since, but has been convinced to come back in. So I might have a wanderer on my hands after all.

Laughter

Today I had a good visit with Mom. And I didn’t expect to. I checked my office voice mail this morning, and she had left three messages in the course of about four minutes, sounding very confused. She has a hard time conceptualizing that she can speak to that voice mail and know that I will eventually hear what she has said. That was actually another early sign of disease – she was confused about the answering machine at her house. I would call her and leave messages, and later she would tell me that she was responding to me – meaning she was standing there listening to my messages and talking back to the machine – and she didn’t understand why I wouldn’t acknowledge what she was saying.

She wasn’t sitting the lobby of her facility when I arrived this morning, about 40 minutes before lunchtime. She often hangs out with friends in the lobby, and beginning about an hour before mealtime, the lobby fills with residents waiting to file into the dining room. She was resting on her bed when I got to her apartment. She seems to be taking mid-morning naps a lot these days. She came out and immediately said, “I called you.” I was braced for what she might need to report. I asked if something was wrong. “No. I just called you.” Whew! Then she said, “Whoever hears me talking must think I’m an oddball.” She simply does not get that only I hear her messages, but I reassured her that that was the case. “Oddballs are usually entertaining,” I said. She laughed. She muttered something that I couldn’t hear and I said, “What?” “I don’t remember,” she said. And she laughed and laughed. I am always so relieved when she laughs. And I think that despite everything bad that goes along with Alzheimer’s, I am lucky that Mom has retained so much of her love of laughter. She always had a strong, loud laugh, and she still does. Now she just aims it at herself most of the time. And what a relief that is, that she can laugh at what must be such a frustrating thing, forgetting in seconds what you wanted to say.

Maybe I should start at the beginning

So, I’ve been my mom’s primary caregiver for more than two years. Why start a blog now?

I have tried to hand-write a journal, but didn’t stick to it. I’m a writer by profession, so it’ s convenient and comfortable to write on a computer. I enjoy reading other blogs, and in many cases, the more personal they are, the more interesting they are.

Also, I took a look around and didn’t many blogs on this subject. Which shocks me. And many are somewhat serious in nature, trying to help newbies to Alzheimer’s find online resources. There is definitely a place for that, and I am grateful those sites exist. But this will not be one of them.

If I am going to help anyone, it will be by exposing the oddities of the Alzheimer’s experience. If I can remember to do so, I am going to transcribe some phone messages my mother leaves me. Even better would be recording our conversations. I have read a lot about this disease – books, listserves, Web sites, brochures, news stories. I am still surprised by my mom’s behavior. I think that’s partly because it is my MOM doing these weird things. But also, everyone’s a little different. All Alzheimer’s patients might be confused and forgetful, but the way that manifests is a very individual experience, I suspect. A peek into my mom’s life might just give others a hint at what they can expect.

And for those who know me, this might explain a thing or two about how I am behaving on any given day.

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