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.