Life Unfolding

I have not embroidered in aeons. It used to be that not one day would pass without my spending some time at it. For the past year, embroidering has been put on hold, until last week. I have other projects that have not been finished yet... a rug, a sampler... but I started this work because thanks are due. Through the magic of Internet, I met a nurse in another country who specializes in geriatrics. Without her help, I could not have dealt with the past weeks. Each stitch will be wrought with gratitude.
My mother has started day care and she enjoys it. She enjoys the movement, I think, and the feeling of participating in life. She has been approved to spend 3 days (half-days really) each week, but we're going at it incrementally. This week, and next week, she will be going 2 days. Last week, when I picked her up, I stood at a distance, watching. They were having a badminton game, all participants sitting in chairs and the birdie being a pink balloon. Mum was hitting grand slams like there was no tomorrow. :-)
A new doctor has been found and I'm relieved.
The last meeting with the research group was held last week. I'm flying solo now.
Variations occur day by day, or within the day. Where my mother can have very accurate recollections of people and events, sometimes she forgets relationships, with my sibblings, or with me. So I laugh and remind her that I am her daughter, or that my brother is my brother and her only beloved son. She doesn't seem too perturbed by it, she just answers matter of factly "Is that right?".
She's eating well. She insisted on coming to the hospital with me yesterday when I went for laser surgery to my eyes.
How nice if we could have a nice long period of calm and relative well-being. A time to enjoy life. This morning, I visited a blog that I admire, Maple Corners, written by Annie who was caregiver to her mother. I say was because as I started reading her most recent post, I learned that her mother passed away suddenly last Thursday. Oh, how life is fragile, and how unexpected our fates.


We invest ourselves and think life is an endless continuum. And life pulls the rug from under our feet whenever it can. The other day, I filled the enormous bird feeder that hangs from the corner of the veranda. Later, as I was working, I heard a dull thud and thought to myself that it must be the feeder that had fallen down. I had a deadline to meet and did not go check right away, but while I was preparing dinner, I decided to investigate. The feeder was no longer hanging from the post, so I looked onto the ground below. There it was, on its side and next to it, my friend the chipmunk. The loop that holds the feeder was intact. The chipmunk must have jumped onto the feeder and it swung off the hook, falling to the ground with the chipmunk. My friend was mortally hit. I was sad as I disposed of his tiny body. He brightened many a winter day with his antics.

update

The past few weeks have been filled with events. Just to give you a glimpse of the present situation, my mother is home, she's eating well, she's in good spirits and active. I hope it lasts.

My sister came for a visit on the 26th (she lives in Europe). She had suggested I take a few days' holiday, but somehow I could not see myself going off and leaving her to take care of my mother without having been prepared for the changes since February. So I suggested that we go to the seashore together, all three of us.

Before we left, my mother had 2 medical appointments to go to. The first was with the geriatrist that she should have seen last year, and the second, a week later, was with the geriatric psychiatrist that had been recommended by my contact at the other university hospital.

The outcome of the appointment with the geriatrist was that my mother suffered from orthostatic hypotension. He wanted to admit her at the geriatrics ward for an evaluation that would take at least 2 weeks to assess the causes of the hypotension and to see if it was reversible. My sister was arriving 4 days later, our trip was planned for the following week and I remembered only too well last year's evaluation that was supposed to take 10 days and had finally taken 5 weeks. My mother had come back home in far worse shape than when she had been admitted. And subsequently, we had been left to muddle through as best we could, the only help to be gotten by the general practitioner. I told him that we wanted a few days to think about it because of the visit and the trip. He recommended that my mother sleep with her head elevated, that she wear support hose and that she drink lots of water.

We returned home and I wrote to an acquaintance who had just retired in France. Her specialty? Geriatrics. She was kind enough to give me the protocol to check my mother's blood pressure and to chart it, plus lots of information on the condition. Since she was having a few geriatrists and the nurses from the university hospital where she worked for a meal, she asked for many details that she submitted to them as a case study. The input was welcome and she followed through by mailing me lots of literature and some handwritten notes on care. I noted the blood pressure, as I was taking it, and submitted the results to her by email, as well as to the visiting nurse. They did not detect more signs of hypotension. Meanwhile, I was having my mother drink lots of fluids, in case the condition had been caused by the antipsychotic medication she had been taking.

My sister arrived and my mother was relieved of the stress she had been having about the visit and how my sister would react to the changes in her. On the Tuesday, we had the appointment with the psychiatrist. She examined my mother for an hour, then met with me afterwards. She asked if I thought my mother was depressed and I said that since she had been taken off the medication, I did not feel she was depressed. I did feel though that if medication could be avoided, it should. She told me that she did not think medication was needed. Therapy would be of no use, since my mother's analytical capabilities were very weak. She said the problem with food might be caused by some physical condition, like having problems swallowing. This opened up new avenues for me to explore. I'll have to do research on menus that are liquid-based, yet complete (apart from Ensure). My nurse friend from France had hinted that adding egg whites to food would add protein. Lots of research to do in that area for me.

We were all relieved at the outcome of this meeting, somehow, even if the prognosis is not very positive.

The next morning, we were off to the seashore for 3 days. The trip was fun. My mother enjoyed herself and even went for a half-mile walk to the beach. She ate well throughout and declared that she would like to return in Spring.

My sister has now left, promising to come back in January, then in May. We will go off to the seashore again.

This Wednesday, my mother started daycare. It went well. I plan to start her off progressively. For 2 weeks, she'll be going one day a week (from 10 am to 2 pm), then 2 days for 2 weeks. Finally, in a month, if all goes well, she'll be going to daycare 3 days per week.

Since the geriatrist's diagnosis had been that my mother suffered mainly from "no drive dementia" (where all initiative is absent) with a minimal Alzheimer component, I have been trying to keep her busy so that she doesn't head for the bed to sleep. I plan for an activity every day, whether it is the nurse's visit, or the daycare, or the caregivers that come on Fridays. Today, it's an appointment at the hairdresser and we'll follow that up with pizza at the restaurant. Tomorrow, we go to the farm to get maple syrup. For the past week, she's been eating 2 buttermilk pancakes and maple syrup for breakfast. Joy!

A Terrible Drug

The past weeks have been harrowing and it culminated on Sunday evening, this past week. I had noticed that my mother was free-falling. If I looked at the seven stages of Alzheimer, in one year, she had gotten to stage 6. She would not get up any more, wanted to sleep all day, went through bouts where all she could say was "no" and couldn't say why. Couldn't dress herself anymore, would put her nightgown over her street clothes. Stared blankly in the distance, would eat nothing whatsoever. On Saturday night, it took me 3 hours of pleading, cajoling, ranting, begging, any strategy I could devise, to make her drink one bottle of Ensure. I was at wits' end.

Sunday was not much better. Breakfast took 2 hours, then she headed for her bed and slept all day. I had the impression she was so deeply depressed that she was starving herself to death. On Sunday evening, she would eat nothing, so I brought the bottle of Ensure out again. One sip, ten minutes of convincing, another sip, and on and on. At one point, I looked at her and she was staring at me with a strange look I'd never seen before. She was actually glaring at me. If I asked her what was wrong, she came out of it and would say "Nothing", but the look kept coming back. I took her blood sugar level, it was fine. I took her blood pressure, it was fine too. I'd just finished doing this when she went into a seizure, then fell on her side. Luckily, she was sitting in an armchair, so she didn't hurt herself. I straightened her up, and she came to. The seizure did not last more than 10 seconds. I grabbed the phone on the table next to the armchair and called Emergency.

They took her to the local university hospital emergency. A neurologist and his residents examined her. I had brought her pills along with me (I had given the top portion of an old dyspill to the ambulance attendant). One of the residents came up to me and asked me if my mother had been prescribed Haldol. I said "no, she takes Zyprexa". He went away and came back again and said "The drugstore says she takes Haldol". I looked at him perplexed, then light dawned on me. We had changed drugstore and the attending physician had phoned in the prescriptions. Maybe there had been a switch then?

They took her off the Haldol. Here's a link to an article on Haldol and Alzheimer patients... (click here). Out of 9 negative reactions, my mother suffered from 7. According to the authors, Haldol is a sinister choice of medication for people suffering from Alzheimer because "as symptoms develop, doctors may mistake them for worsening of the underlying disease. The physician might increase the dose of the antipsychotic medicine and temporarily suppress the symptoms, but tardive dyskinesia returns."

I was furious. Not only had the attending physician not followed up so that my mother could see a gerontologist, he had messed up a few times with the medication. He had not been able to control her blood pressure and that had resulted in a week's stay at the hospital where another physician found a drug that controlled it. She had been admitted with blood pressure at 200. Then he had not followed up on how my mother was doing on the Aricept and a pharmacist had to inform him that the adverse effects my mother was suffering were due to the medication. Then again, he did not know about Memantine (Ebixa) and it took more than a month for him to react and add it to the Exelon that had replaced the Aricept. He never increased the Exelon from the starting dose and on top of this, he was adding an antipsychotic drug with terrible side effects to her list of medication! He was negligent when he cancelled the appointment on the Thursday preceding the seizure because (according to the secretary) it was too soon after the new medication (the Ebixa) had been added! (it was 6 weeks later).

A brain scan was done and it revealed that practically no change had occurred since the last brain scan (a year ago). All the changes I'd observed were due to the medication? An EEG was done... no traces of epilepsy.

The neurologist wanted to transfer my mother to the university geriatrics evaluation department. I refused, saying she had just undergone a 5 week evaluation a year ago and that the gerontologist had never followed up 2 months later as he should have and worse yet, my mother's file had been closed for some undisclosed reason.

The geriatric psychiatrist from the other university hospital had called me on the preceding Friday. He had recommended a geriatric psychiatrist in our region. I insisted that a consultation be obtained so that any medication to treat anxiety be prescribed by a knowledgeable specialist. The appointment was gotten for the end of the month.

My mother was finally released on Tuesday. She has been eating relatively well, has been sleeping well and is much more active during the day. She is a joy to be around, has a positive outlook and is not anxious when she forgets things or is mixed up. She told the nurse that visits every week "I am here", meaning that she was present.

The resident who signed the release forms for my mother asked me if I was still contemplating getting a second opinion from another source (I had said to the neurologist that any recommendation made by that university geriatrics department would be gone over by another university hospital). I said "yes, I have lost my confidence in the people who have treated my mother and I want a second opinion." He answered "You are entitled to a second opinion, and I approve your decision".

My mother will be seeing a geriatrist next week at this university hospital. Once the recommendations of the psychiatrist and geriatrist are in, they will be reviewed by the other university hospital.

A friend of mine, a lawyer, has recently had his first experience with elderly clients. The man had suffered a CVA and his wife was less autonomous than she had once been. None of the children wanted to involve themselves, except to force them to sell their home and put them in a hospice. The man was not able to drive anymore, and his wife could not. In all other areas, they were doing just fine. In building his case, he evaluated the medication given to this elderly couple, and more specifically to the man. It would seem that most of the medication was given to regulate the patient so that he would be fully adapted to a hospice environment. My friend was outraged. If simple accommodation measures were put in place to provide for grocery and medication delivery to their home, they could manage well, yet the system was pushing them into an institutionalized environment. I can't help thinking that either willfully, or through sheer negligence, my mother's attending physician was worsening her symptoms so that she seemed more ill than she really was.

I wonder if any of my readers have any thoughts on this? And what has been their experience?

Sundowning

My mother's condition is free-falling. The attending physician is lapsadaisical in his approach. An appointment was scheduled for this past Thursday and on Tuesday, the secretary called to tell me that the appointment was cancelled "because it's too soon after the new medication has been prescribed". The following 2 days, my mother refused to eat and wanted to sleep all the time. It seems to me like she is depressed.
I revolted and I have been desperately trying to get my mother an appointment with a geriatric psychiatrist at a university hospital geriatrics department in another city, while hunting for a new GP. I want (and need) a second opinion. The local university hospital geriatrics department that did the evaluation last year never followed up with the appointment with the geriatrist even though he was to see her 4-6 weeks after she was released. I had followed up with the case worker, and nothing had developped. The attending physician has proven that he has no knowledge of appropriate medications.
The attending physician, according to his secretary, was going to give me a call. By Thursday, I had not heard from him and I called my own physician who works out of the same clinic (she is the one who intervened and increased the Exelon which should have been increased 2 weeks after the treatment started, if there were no adverse effects) to ask that she take charge of my mother while I hunted for a new GP. Her caseload is overflowing and she cannot fit my mother in, but she offered to speak directly to my mother's doctor. I accepted and he called this morning. He asked pointblank if I thought he was not doing his job and I replied emphatically "yes". The outcome of this not so veiled accusation of malpractice is that he will arrange for my mother to see a geriatrist next week. He was made fully aware that any course of action prescribed would be overseen by another university hospital.
This morning, I had already called the geriatrist who was supposed to follow-up last year. He was away on vacation but the department nurse took the call. She was not surprised that my mother had not been seen because, apparently, there was a huge backlog in the good doctor's clinics. She did indicate that other geriatrists were more up to date, but that it would be very difficult to transfer my mother's file to another doctor. She did check computer records and was quite surprised when she found out that my mother's file had been closed. She will be having the file sent to her to see what happened.
I am learning skills I never wanted to learn. This is more than assertiveness training and it is draining and time consuming. Caregivers already put a great deal of their energy trying to ensure that the patient is comfortable, without having to expend energy fighting tooth and nail to get decent medical care. And caregivers do not need the runaround given to them by doctors who are condescending, misinformed and unwilling to act.
I found out about the Ebixa from a caregiver who went through the mill when his wife suffered from early onset Alzheimer. Without the benefit of his experience, I would not have known half of what I need to know to cope with the situation. This blog is new (as I am new to the caregiving role), and there are not very many comments to the posts I write indicating that what I write is read, but I do know this. If caregivers are to have the information they need to fulfill their role, "real" information has to be given to them, not just lipservice and unpractical and vague advice. So I will continue posting, as things develop.
While having to deal with these new (unexplained symptoms), I came across information on the Sundowning Syndrome. Part of what my mother is experiencing is just that. Her behavior changes when the sun sets. She then goes into a "no" mode. Mostly "no" to food, or to brushing her teeth. Why is it that this occurs at this time? Is it because of some primeval fear of the darkness to come? And what does it say about what the Alzheimer patient is feeling?
What is Alzheimer if not a slow and steady dimming of the lights? Bit by bit, each light in the house is closed until all that is left is darkness.
This evening, yet again, dinner was refused. We were out at a restaurant for dinner and usually, having dinner in a public setting is more successful than having dinner alone at home, as though she still has a tight grip on her appearance in public. This was new and it was emphatic. Nothing was eaten. As we were heading home, I stopped at the store to get some milk. It is right next to the lake and the sun was setting. It was one of the most beautiful sunsets I have ever seen. We watched it and I took some pictures, hoping that my camera would do it justice, because I knew exactly what I would do with the pictures.
When we got home, I heated some hyperproteinated chocolate Ensure (it tastes like hot chocolate) and she drank it all while we talked. I had found some beautiful grapes (her favorite fruit) and put some on the plate. She looked at the grapes and said "I'm scared". I asked "Of the grapes?" She said "Yes". I asked "Why are you afraid of the grapes? Because it is dark?" She said "Yes, they look different". So I put my plan into motion and said "You know, Mother, how beautiful the sunset was earlier?" She said "Oh yes". I continued "You know what this anxiety you feel at this time of day is called? It's called sundowning. Isn't that a beautifully descriptive word?" She looked at me, not quite sure what I was getting at and said, tentatively "yes". So I went on "You know that everyone thinks that Alzheimer is a terrible disease because people lose their memory bit by bit, but if you think about it another way, it's like a sun setting. The person who has Alzheimer is turning off the lights in the house, one by one, and tiptoeing gently out of life. In life, you have to take what is offered and see the beauty in it, like the sunset we saw tonight. And you know that I will be there until the last minute while you are turning off the lights and tiptoeing out."
She breathed a sigh of relief. The Ensure was followed by half a brownie and a few grapes.
So what have I learned from all this? Firstly, and most importantly, to listen to my gut feeling, and not to be afraid of confronting so-called experts when they do not act professionally and in the best interests of the patient. Secondly, that the people who are best positioned to give advice are the ones who have walked the talk, not the so-called experts who have stood on the sidelines, watching. Thirdly, that when you are looking for a good doctor, you need to find someone who is well-informed, passionate about his work and compassionate towards the patient and the caregiver. If he does not cooperate with the caregiver, he is indirectly doing harm to the patient and that is called malpractice. Finally, as a caregiver, you have to listen with empathy to what the patient is saying and react with compassion.
The sun has set quite a while ago, and I am now certain that I will be able to sleep peacefully. I'm bushed!
Oh, and the geriatric psychiatrist from the other university hospital left a message on my answering machine. I am to call him on Monday.

Arrangements

Where does time go? Already September and I haven't seen Summer. From challenge to challenge, life moves forward and you don't notice time slipping by.

My mother has finally been prescribed the Ebixa. It seems to be bringing benefits, although I'm not counting the chickens before they are hatched. A definite conclusion to be drawn from this experience is that the doctor who treats the patient is important. If he is lapsadaisical in his treatment, does not have the professional ethics to keep up-to-date on treatments and does not follow up on medication side effects, the patient (and the caregiver) suffer. Needless to say, I am looking for a new physician. This one has done enough damage.

I have found a nurse specializing in geriatrics who visits twice a week. She checks vital signs, both for high blood pressure and type II diabetes. She evaluates mobility and suggests activities that can stimulate memory. Just having a professional assess my mother's well being rather than relying on my (limited) knowledge is a relief in itself.

My latest challenge is to find someone who is competent (and honest) to redo the small bathroom in my mother's room. Handles on the wall adjacent to the bathtub, tiles (walls and floor) so that cleaning is simplified. The recent adverse effects from the medication taught me that anything that will simplify cleaning up is invaluable.

The ergonomist also suggested having a gravel path from the lower floor entrance through the garden for security in icy conditions. Up to now, a path was shoveled over the grass. It can get slippery. At times, if ice builds up on the roof over the front entrance, it's treacherous to use that door until it can be removed. An alternate entrance is vital. The alternative would be that my mother would not go out during Winter. I wouldn't wish it on my worst enemy.

For years now, my mother's symptoms evolved. The third floor slowly became a true attic and junk yard. Empty gift bags and boxes, Christmas decorations and lights left where they were dropped on the floor, old books, unused furniture... over the years it became a mess. I've been sorting through the jumble, regrouping empty gift boxes and bags, Christmas decorations, books, papers, old radios that don't work anymore... when all is sorted and reassembled, the garbage will be going to the dump. The same has to be done in the garage. It's depressing work, it stirs memories, but it has to be done.

In the garage, my boxes of dishes and knick-knacks were stored when I moved to my mother's house. I'm also going through those boxes to separate what I absolutely want to keep and what I will give away or sell. The purpose of all this activity is that when Mum passes away, I can call in the movers to pick up my things within the week. I don't want to have to deal with funeral arrangements, sibling issues and packing my things up at the same time. I'm using up whatever energy I have left while I have it to plan for the aftermath. Strange as it may seem, it keeps a measure of sanity alive.

At the end of September, we will be going for a few days on the seacoast. My sister will be visiting for 10 days and we will go off, as we did in the past, the three women of the family together, for a minivacation by the sea. My mother is looking forward to this and so am I. A change of setting will be welcome. With the rapid progression of her illness, it will probably be the last time she is aware of our presence and of our identity. Bittersweet times.

Food issues are still ongoing. Meals take up to 2 hours. I have to coax, badger, instruct, remind for every bite that is taken. Meals leave me exhausted and I am developing an aversion to food and food preparation. I'm fighting a losing battle.

When The Bee Stings

I've come to know the signs. My mother's illness progresses by increments. She's been free-falling over the past 10 days, losing ground fast. Of course, her doctor was away on vacation (must be because he's on duty 7/7-24/24 just like I am). I had emailed him to ask that he consider adding Ebixa to her treatment (Namenda in Europe, or Mementine in the US) and he replied the day he was leaving saying he did not manage his patients by email. When I try reaching him by phone, I never know when he'll call back. It can take up to a week before he does. Imagine having to sit glued to the phone so that you don't end up with a message on your voice-mail. Totally frustrating.
Since I did not know the name of the medication in Canada, I gave him both the European and American names. He said he did not know of the medication! Took me all of 3 minutes to find the Canadian name with Google (I should have thought of it earlier). In essence, he told me he would research it when he came back from his holiday (August 10) and we would discuss it in September when he saw Mum. A two-month lapse of time.
Mother was so confused at the beginning of last week that I called my own doctor (she works at the same university clinic as Mum's doctor. In fact, she was the director of the training program when he studied medicine). She had Mum's file on hand when she called me (same day). Turns out Mum was still on the starting dose of Exelon. It had not been increased yet (and wouldn't have been until September!). She doubled the dose (well below the maximum daily level) and nixxed adding the Ebixa for the moment (diplomatically drawing a line in her intervention in Mum's file) but recommended that I call Mum's doctor the day he returned from vacation. She herself would put my message in his message box.
Mum is still losing ground. I notice a definite change in her use of grammar. She won't say "your car", she'll say "the car in the driveway". Or she'll use a very formal style of speech. She also has trouble walking. Her pace is unnaturally slow. She still is insecure about everything she does, asking permission to put a kleenex in her pocket, for example.
On Thursday, she had her first episode of intestinal incontinence. I found her cleaning up the floor. I helped her out, got her to the bathtub and washed. Once she was all changed, we went out on the veranda. My brother had arrived and we were sitting on the veranda telling him that Mum had been ill when she gagged. Sounds funny to say, but it was a Godsend that he was there. He went to get the bleach so I could disinfect the floor after I'd finished taking care of Mum and he promptly disappeared in the garden to mow the lawn. I got Mum washed and changed again. We came back out on the veranda and she gagged a second time. I changed her again, and put her to bed to take a nap. I finished cleaning up and got ready to go out to the bank to pay some bills, asking my brother to check on Mum and bring her a bit of ice cream since she had lost all her breakfast when she was ill.
If I had told him about the incident, he would not have realized. Nothing like seeing to believe. So when I mentioned that I needed to get a handheld shower head for the bathroom he volunteered to find one and install it. And since the Friday afternoon caregiver had called in earlier in the day saying she would not be there the next day because she had pneumonia, he even agreed to pick Mum up early to bring her to his house for her birthday dinner. A blessing, because I had planned a dentist appointment for myself in the afternoon.
I had reluctantly called the caretaker's boss earlier in the day to ask that he make sure that she was aware that she was not to show up for work if she had a cold or flu, as she had promised me she would do before. I felt terrible doing this, but I had no choice. We are, after all, in a pandemic and Mum is vulnerable. He answered me that his workers had instructions to stay home when they were ill. I said to him that in all respects, she was excellent except for that particular point and that if she formally agreed to respect that one condition, she was more than welcome to come back. I hope when she comes back from her sick leave, that we can iron things out.
The "accidents" might have been caused by the increase in her medication, or they might have been caused, as I suspect, by the sheer disgust she felt at what had happened. In any case, she has not had any more stomach upsets since.
I find that Mum functions relatively well in social settings. She was fine during her birthday party although she told me the next day that she did not understand what people were saying. When her grandson called on Sunday, she told me when she hung up the phone that she did not even know she had a grandson.
We spent a quiet Sunday. I prepared her breakfast and the weather was nice enough to eat on the veranda. I put everything on a plate that she particularly liked and brought it out to her. She looked at it and made a face. I went inside and just sobbed. I'm discovering that when you take care of an Alzheimer patient, your ego has no place in the equation. Once I'd calmed myself, I went out again and the breakfast had been eaten.
So the learning continues, and the observation of signs and symptoms. I guess that is what is the most tiring about the experience. That and the pain to see a loved one so vulnerable.
The bee is stinging.

Assuming Responsibility

Where does time go? End of July soon and I haven't seen a hint of summer. Emotionally, it's been a roller coaster ride. After a distinct improvement, in the past week, things have gotten confused.
I don't know if it's a stage of the illness, but in the past few days Mum has been talking constantly, as though she is thinking out loud. By the end of the day, I'm bushed. Or she asks permission for everything she does. I know she is feeling anxiety, and just my presence doesn't seem to be enough. It's heartbreaking. I distinctly feel that she has capitulated and handed adulthood over to me. I just don't feel I can take that on, but then I know I have no choice.
And she misses people. My brother, for example who is away on vacation. She says that life is sad, when she refers to him and I have to agree with her. My brother has "disengaged" himself. Sometimes she forgets his name (and I don't blame her).
I feel so inept.