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.