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.

Journal On Treatment Combinations

Life is strange, sometimes. I might be somewhat isolated, but resources «find» me. Through Internet, I met a caregiver to a person who had had early onset Alzheimer. Through our email exchanges, I was able to learn about certain drug combinations that had worked for his wife. Invaluable information.

The researcher for the caregivers' medical study also suggested I journal events such as medication prescriptions, symptoms and progression, so that a history of the progression of the disease is available, when needed. The blog will be my journal.

Initially, after the evaluation, no medication was prescribed for Mum. The accent was put on controlling her blood pressure. Her diagnosis was mixed dementia (mostly vascular dementia combined with Alzheimer). When she was admitted in hospital after the severe hypoglycemia in April last year, her blood pressure during the following week was sky high. As high as 200. She was kept in hospital until it was lowered, for a week. New medication was added to control it. Her doctor did not participate in the treatment, since he did not have practice rights in that hospital, it being in a different city.

When Mum got out of the hospital, she had a follow-up appointment with her doctor, who modified the prescription, keeping only one of the hypertension drugs. She was sent home and I had instructions to monitor the blood pressure.

After the evaluation at a geriatrics department at the university hospital, the combination of drugs was yet again changed. The hypertension medication stayed the same, since it was working well, the anticholesterol drug as well and the thyroid treatment. All in all, her medication was streamlined. No medication was given for the Alzheimer until February. She was prescribed Aricept.

Side effects were a severe runny nose and sneezing bouts. She also had difficulty breathing but since she had had the flu, it was attributed to it and not recognized as a side effect of Aricept. The runny nose was so acute that it made eating meals normally impossible. Think of using 6-7 boxes of Kleenex per week and you'll have an adequate picture. It was the druggist who hinted that it might be a side effect of Aricept.

I got back to her doctor and it was changed for the Exelon. A nose spray was prescribed and the asthma medication stopped. The runny nose is, for the most part, cured. The nose spray is now part of her daily medication.

I noticed a distinct improvement with the Exelon. Mum was still apathetic, slept a lot and her anxiety medication was changed last Thursday. She had been taking a minute dose of Xypraxa. It was changed for a minute dose of Haldol. I think the agressivity related to dementia is caused by the anxiety the patient feels. The Haldol is working miracles, I think.

Yesterday, for example, third day into the new combination of treatment, Mum volunteered to darn a nightgown I had torn near the hem. I of course accepted! I went into her room to bring her the nightgown and she had taken her sewing box out, gotten the thread and was busily trying to thread the needle. She darned it for me perfectly!

I was amazed at the initiative she had taken because for the past year she has been quite apathetic. I was amazed too at her being able to follow through to completion. That has not been happening for a long time. And I was even more amazed when she used a familiar term of endearment with me. I had not heard it for more than a year.

It was a red letter day!

My new found friend confirmed the Exelon treatment and suggested I speak with Mum's doctor about combining it with Memantine. I think I will. I guess treatment combinations are individual to each person and like anything else, it is a case of trial and error.

Respite

Friday afternoons, every other week, are respite afternoons, whether I like it or not. Sometimes I just wish I could take the afternoon and sleep, to forget. I guess the forgetfulness I was talking about is trying to tell me something ;-P

I have been recruited to participate in a medical study for caregivers that consists of 7 one and a half hour meetings with someone from the geriatrics department of the local university hospital. This Friday afternoon was meeting no. 6. We went for a picnic.

Strange you might think, going for a picnic when you're supposed to have a "serious" interview. That is the beauty of the whole thing, the person who interviews me is a fun loving human being. The meetings leave me a bit unsettled because they focus on various aspects of the caregiving experience, lightly skimming on the subject. The deeper reflexion comes after the meeting is over and surfaces whenever it can (like 3:20 on Saturday morning).

Today we spoke about resources that are available. Still more lists of things to take care of and to organize. I identified 2 priorities. The first is to get the local social services to send a nurse at home to take whatever blood samples are prescribed by the doctor. I don't have to dress my mother yet, she is autonomous in that respect, although choosing clothes is becoming increasingly difficult for her. The challenge is that the clothes keep moving around, from one side of the closet to the other, so that you're always looking for things. She moves them around. Is it her way of communicating that she feels lost, I wonder? So when we have to get to the hospital for blood tests before 9:30 in the morning, I have to start "directing" her to get dressed at 7:30 all the while explaining why we have to go out at this goshawful hour (and coping with outright refusals to go). The social services did not, of course, volunteer the information that this could be arranged, so I'm thankful that I found out it could.

Then I remembered that social services had said that there was a security telephone service that is available. I had forgotten (oops). Last winter, when we had a terrible bout of flu and I was so ill for a day, through the fog in my brain a clear thought came to mind. If something happens to me, Mum won't be able to call for help. Thankfully, I was able to manage by sleeping an hour at a time and putting the alarm clock to wake me up, but now I will arrange for the phone service.

The unsettling thing about dealing with mixed dementia is that it is like walking on shifting sands. You never know how the day will go or what challenges you will have to face during the day. At the end of the day, you mostly feel inadequate.

Forgetfulness

Sometimes I feel just as vague and unfocused as Mum probably does. It worries me. Is it because of some perverse empathy? Or is it just me?

Empty Nest

The poppies bloom in the garden just around Father's Day every year. We have always had poppies in the garden. They were my dad's favorite flower. At the cemetery where he is buried, real flowers are prohibited. The only flowers allowed are plastic ones. What a pity.

We devised a plan, my mother and I, to foil the plastocrats. Dad's tombstone is right on the edge of the cemetery, a foot from a wire fence separating it from a wooded adjacent vacant property. We will go with a few plants of poppies and plant them just on the dividing line, behind the tombstone. It might work, but then again it might not. We'll never know until we try.

The new medication seems to be working fine. Mum is more herself than I've seen her in many months and there don't seem to be any side effects. I still notice the changes and I find it disorienting that she asks "permission" for everything she does. So unlike her, and so unlike me to play this role.

But it's a small price to pay for her presence. The other day, I found this empty nest on the lawn. I picked it up and looked at it closely. What care had gone into it's construction. There were some packing shredded plastic paper bits, some animal hair (no doubt from my cat). The nest looked as though it had been very comfy, but now it was abandoned. What tragedy had emptied it? Had the eggs been attacked by some marauder? Or had the couple been killed by a stray cat? Or was it those darned ravens?

I sometimes stop and think of what life will be when she is no longer there and a cold hand touches my heart. I quickly banish the thought and tell myself that that bridge will be crossed when the time comes. In the meantime, I focus on each passing day, counting my blessings.

Why Bother?

The new medication seems to be working. At least, there haven't been any side effects on the half-dose. Full dose starts next Monday. I recognize my mother more often in the past few days.
The other day, I dragged her into her favorite clothes store. For the past year (I guess since the diagnosis) she has had no interest in making purchases (as though she thinks it's futile). Luck was with us... right inside the store, on sale, were exactly the items we needed (and love). She came home and put her purchases on the bed to admire them. :) So, I repeated the experience for new nightgowns. And she was happy with that as well. I think it's important to «invest in tomorrow», to do as though tomorrow will come, rather than hunker down and wait for the worst to happen.
There's been a tiny break in the weather... enough to have breakfast on the veranda this morning. The poppies have started blooming in the garden, so I went to pick some and to take pictures of the activity. Some bearded irises, daylilies, bachelor's buttons and the peonies that are starting to unfold with the help of busy ants.
We will be going out later this afternoon, to get a shovel to replace the broken one, so I can do a bit of gardening, to get some groceries and to have dinner on a terrace.
It's this quality of life I find important. Had Mum been placed in a retirement home, she wouldn't have the pleasure of breakfast on the veranda and usual day-to-day activities. And this, for me, is what gives full measure and sense to caregiving.

Sequels

The crisis is over, thank God. Mum was not ill again, I got to speak with an on-duty doctor at the clinic on Saturday and we suspended all medication for a few days, except the blood pressure medication. I monitored Mum closely throughout the weekend. She was shaken by the experience, and anxious.
The pharmacist-drugstore owner denied that her pharmacist had made an error when she finally returned my call on Monday evening. I guess she had had time to speak with her lawyer before speaking with me. In the meantime, I had spoken with Mum's doctor earlier during the day, we had established a protocol to reintegrate the medication and he had called a new pharmacy to give them the prescriptions. Everything being set, I was now free to inform the former pharmacy that they would no longer supply medication for my mother.
We have been sleeping a lot yesterday and today, a reaction to the stress we went through. The anxiety, and perhaps the absence of medication, left Mum more disoriented than I've ever seen her, more anxious. She asked for instructions on everything... Can I put the kleenexes in my pocket? Have I eaten enough? Can I go to my room?
My heart was breaking to see her so vulnerable.
I guess we have reached a new stage of the illness, where I will have to do some positive reinforcement so that anxiety is reduced. Her doctor also advised that I should start «hiding» things from her, not to inform her of things that might make her anxious. This is a new element in our relationship. We have always been open one with another.
It's too bad, because Mum is still Mum and she still has her wry sense of humor. When I told her that the owner-pharmacist had said that the pharmacist who had given us the pills is an excellent professional, an expert with the laboratory hood, she asked : What does he do with the hood? Use it to smoke pot?
We laughed.
The weather is not cooperating. It rained all day today. We have had, up to now, only one evening where we could sit comfortably on the veranda at dusk. With all the rain we've had, everything is very green. Hopefully, it'll get warmer and with the grace of God, we can enjoy a lovely summer.

Caveat Emptor (Buyer Beware)

If I were to give you details of today, you would not believe me. Let me just say that the medication has been changed, a new nasal spray prescribed and that the drugstore gave me the new medication for last night and this morning, took back the dyspill to make the changes in medication until next Tuesday, but that there was an error at the drugstore. They gave me 2 pills that are not the same as what was in the modified dyspill they delivered at the end of the morning. I didn't notice the difference until dinnertime.
On Fridays, a woman spends the afternoon with Mum so that I can have some respite. When I came home at 5, she told me that Mum had been violently ill, her blood pressure had gone up after the episode, she had given her some juice and some toast to settle her stomach and then taken her blood pressure again. It was fine. Mum was still pale.
My mother never has indigestion, never. The only thing that could account for this was the new medication. So I called the drugstore to find out if it was a side effect. It was and I was told to give the new pills with food. I hung up, got the dyspill that had been delivered and that is when I noticed that the pills were not the same that Mum had taken the night before and this morning. These had the name of the product written on the caplet. What she had taken the prior evening and in the morning was not a caplet, it was a solid sugar coated pill, the same length, oblong-shaped, same colour. I remember that I looked at the pill last evening and thought to myself that Mum would have trouble swallowing it. I looked for a cut mark on it and there was none, nor was there any name.
So I called the drugstore again. They denied it. But the problem was not gone... What had Mum taken? What was the life of whatever she had taken? Had her system rid itself of whatever it was? I went to see my own druggist (different than Mum's) and asked if I could check the compendium. He suggested that she had gotten sugar coated aspirin and showed me the pill. It was not the same. The one Mum had gotten had no ridge at all on it and this one did.
What was I to expect? Do you think that one pharmacist will put a knife in another pharmacist's back?
So on the way home again, I stopped at the ER (we are Friday dinnertime, the clinic is closed, everyone is off on a happy weekend... a desert). Of course, having no patient, I could not meet a doctor, but I spoke with the head nurse. We analyzed the options (bring Mum in to be put under observation, do the monitoring myself and rush her to emergency if things got worse - she did give me the information that the regional hospital would be able to take blood tests to find out what Mum had been given - perhaps suspend all medications until I could speak with her doctor). When I got home, Mum was comfortable, her skin tone was good, she was shaken by the experience, but okay.
She found me crying in the kitchen while I was preparing her dinner - soup, soda crackers, a bit of cheese and some cantelope. She asked if she could do something to help. I answered «Yes, please don't give me any more trouble about eating. It's going to kill me.»
She ate her light dinner. We talked about the experience. We discussed how she was not going to be taking any pills this evening and how I would try again to reach her doctor tomorrow or any replacement to be given instructions on the protocol to follow.
We talked about my father (it will be 20 years ago tomorrow that he passed away). We cried a bit and said how we miss him. He was a pharmacist. In his whole career, he only made a mistake once in the lab and he discovered it right away. He was ashen and distraught by the experience. Had he been there today, murder would have been done.
At bedtime, her blood pressure was right on, she had no nausea. She ate a few cherries and half a brownie.
This blog seems to be turning out into a journal. I guess the experiences I will be living are probably not different than the ones any caregiver will face. If my experience can be helpful, then let it be.
The only good thing about today is that Mother ate her dinner without blowing her nose once. A red letter day.

Food, for thought and the body

I work from home, which is a blessing (and a curse?). Yesterday, after fixing breakfast for my Mother, I left her alone to finish some work. A few hours later, I found her, quite apathetic and somewhat confused. Half her breakfast had not been eaten.
The real trouble started a little over a year ago, when she had a severe hypoglycemia episode. She had been checked regularly for diabetes and had no sign of it. Not suspecting that this is what she had, I called the doctor and got to speak with him within a half hour. He of course told me to bring her to the hospital and, if I had trouble getting her to get to the car, to call the ambulance (pretty basic stuff, but when the sky falls on your head, it helps to be given a sense of direction). I couldn't get her to sit up so that I could dress her, she was like a rag doll. I did as best I could while waiting for the ambulance. When it arrived, the attendant took her blood sugar level. It was at 1.7 mmol. A hair breadth's away from a coma.
To make things brief, she stayed in hospital for a week. She had another hypoglycemic episode at the emergency unit during the following night. Her blood pressure was over 200. No diabetes was diagnosed and they ran a battery of tests. Finally, her blood pressure came down to acceptable levels. Her personality, during the week she was in hospital, was completely alien. Mr. Hide and Dr. Jekyll. She terrorized doctors and nurses, refused to eat, complained bitterly and was totally unaware of why she was in hospital. I would bring some homemade soup, or food that she liked from the take out. She managed to eat a bit.
In August, last year, she was admitted to a specialized hospital unit for a geriatric assessment. At the end of 5 weeks, they had finally assembled the data that would enable them to make a diagnosis. She was found to have diabetes, but I was told not to insist on feeding her a diabetic diet.
I have had type II diabetes for over 10 years now, and counting carbs and assessing food intake is second nature to me. My diabetes is well managed and I have never had a hypoglycemic episode. So while preparing food for my mother, I apply what I know. Mum is in denial about all of her health problems, including diabetes. She refuses to eat 3 meals a day (she never has in her life) and can't understand the notions of carbs, proteins and fat. To her, food is food, whatever the source and she just doesn't like most food.
During the past months, she has gone on binges. Not in quantity, but insisting on eating creamed chicken for dinner for 3 weeks in a row, or refusing to eat proper meals and eating fudge and bananas and ice cream. She, thankfully, accepts drinking some Ensure (I get the one that gives extra proteins) that she drinks hot, with a touch of coffee added to it. And then, food she used to eat, like yoghurt, is now banned from her choice of acceptable foods. For a while, dinner was a bowl of tomato and rice soup with soda crackers and cheese. But that was for a while. Lately, she craves smoked meat. Pizza, she will always eat, so long as there is only tomato sauce and cheese.
Every day is an adventure in the kitchen, with most of the food going into the garbage can.
So when I found her apathetic and confused, I didn't even take the time to take her blood sugar level. I gave her some cranberry juice, followed it with a bottle of Ensure and ended the snack with some cantelope. Then I waited a few minutes and took her blood sugar level which was normally high after having taken some food.
It took her a while to get her bearings and four hours later, I gave her dinner. About 3 ounces of steak, a whole wheat toast, some asparagus, half a tomato and some cucumber slices. She refused to eat the bread.
Did I mention my mother is a Haagen Daz freak? I followed the meal with a banana, some maraschino cherries and some Maya chocolate ice cream.
I finally got an appointment with her doctor. He'll be seeing us this afternoon. I hope he'll be able to do something about the Aricept and the allergy symptoms. She told me last evening that the runny nose and sneezing is wearing her down (think of going through 6 boxes of Kleenex in a week and you'll get the picture). And there must be something he can prescribe that will make her feel hunger and have a craving for food?
How heartbreaking. All I wish for is that when the time comes for her not to remember, all she remembers is a feeling of well-being.
One should leave consciousness with gratitude for the road traveled and the experience of life.

First Post

I am a caregiver to an elderly woman suffering from mixed dementia (Vascular Dementia and Alzheimer Disease). With this blog, I want to share my experience with other caregivers. Your comments and feedback are important to me, and are welcome.

The diagnosis was set a little less than a year ago. During the past 9 months, I have been on a roller-coaster, adapting as I could to a variety of symptoms and behaviours. The minute I think I have things settled, another set of symptoms or a different behaviour kick in. Is this your experience as well? How do you cope?

The biggest challenge I face with my mother is getting her to eat properly. Lately, I haven't been able to get her to eat «real food». So dinner is always supplemented with a bottle of Ensure. I know this will only lead to the illness advancing at a quicker rate, but no measure of encouragement, or dissuasion, can get her to eat real food. What would you do or how did you manage?

Over the past months, I have been able to put some support tools in place. I am lucky enough to have a weekly period for respite. A half-day, once a week and, every other week, an eight-hour period instead of the four-hour break.

I find our health system seriously lacking in terms of information and medical support. Prescriptions are issued but no regular follow-up is made. The doctor is gauche in his approach... sometimes the information the caregiver needs is simply not given. Have you had this problem? How did you settle it? Did you have to change doctors?

I look forward to hearing about your experiences, or receiving your suggestions. I feel as though I am reinventing the wheel and I have to admit that I find the situation very challenging.