Sidebars and Med Changes

I think we’ve established that Alzheimer’s is frustrating at best. But sometimes, the sidebars are even worse. In January, Dad’s primary physician and I decided we needed to change his anti-depressant. He had gotten to the point where he was sleeping an average of 19-20 hours a day. When he was awake, he was deep in the throes of a crushing depression. Frequently, he would cry but couldn’t tell me what was wrong.

At the same time, the decision was made to switch him from Aricept 10 to the new Aricept 23. ARICEPT does not cure Alzheimer's disease. All patients with Alzheimer's disease get worse over time, even if they take ARICEPT 23 mg. But it has proven effective in many cases, to slow the progression of the disease. For those who respond, ARICEPT 23 mg may take several weeks or longer to work. Knowing all of this, we began the new drugs.

Since the switches, Dad has been sleeping less and has been more alert. His outbursts of tears are fewer and fewer. He has had fewer delusions and seems to be clearer minded. The down side is, as he frequently remarks, he “feels like shit”. After about 10 days on the new medications, he insisted he needed to go to the hospital. I had just begun cooking dinner so I turned everything off and sat down beside him. No matter how hard he tried, he couldn’t tell me what the problem was or why he wanted to go to the ER. I decided it was in his best interest to do as he asked.

I loaded Dad and all 4 kids into the car (I dropped the kids of at my husband’s work. I am thankful that I didn’t have to take them with us and thankful that my husband helps when he can) and off we went to the emergency room. When we arrived, I couldn’t tell them any better than he could what the problem was. As soon as he was settled into a room, I stepped out to speak to the doctor. I explained that he has Alzheimer’s and about the recent med changes. With great patience, they began running blood, urine and feces tests. Several hours later, it was clear that his test results were good. They explained to him that the medication changes were probably responsible for the way he felt and that it should improve in 4-8 weeks.

The following week we had an appointment with his kidney doctor. Dad vehemently told him his complaints (he believed that was why we were there). I asked if, perhaps, we should consider changing back. The doctor assured us that he was better off on the new anti-depressant than the old one (in terms of kidney damage) and that it would take several weeks for his system to adjust. Dad was NOT reassured at the news.

We are now over the 1 month mark and he still tells me daily that he feels bad (my wording not his). I keep trying to remind him that we have another month to go in the transition. All of his lab results are amazingly good considering his many health conditions. I wish I could fast forward time for him so that he would feel better, but I can’t. I have to believe that this is all for the best and that the doctors are correct when they say he will start feeling better soon. Sometimes, it is impossible to know what the right thing to do is, but I have to keep trying, praying and believing. There is simply nothing else I can do.

Hope

September 15, 2011


On Tuesday, we had an appointment with Dad’s primary physician. The pharmacy called him for a prescription refill and he needed to see Dad before he could write it. I was shocked to realize we hadn’t been in to see him since last March! For the fist time in longer than I can remember, Dad’s health has been so stable. We go to a number of specialists… cardiologist, urologist, oncologist, hematologist, gastroenterologist, dermatologist… they monitor what’s going on in their particular fields but his primary keeps an overall picture on his health and mental state.

I went in armed with a list of observations and minor concerns. It didn’t take long for the doctor to decide it’s time for us to add another Alzheimer’s medication to the lengthy list of daily meds. While his health has been stabilizing, his mental state has been rapidly deteriorating.

On Wednesday, we started Namenda (Memantine). ***Memantine is used to treat the symptoms of Alzheimer's disease. Memantine is in a class of medications called NMDA receptor antagonists. It works by decreasing abnormal activity in the brain. Memantine can help people with Alzheimer's disease to think more clearly and perform daily activities more easily, but it is not a cure and does not stop the progression of the disease. (courtesy of PubMedHealth) ***Note that it must be used in conjunction with other Alzheimer’s medications (most frequently, Aricept).

Since it will take 30 days to get the full effects from it, I am watching Dad closely for any changes as well as possible side effects. I hope it can help him (even if it’s only for a little while). Dad is unable to perform the simplest of tasks now. For example, if he decides to take the trash out he may take the can to the back porch and empty it but forget to bring it back inside. Or he may bring it back to the kitchen but forget to put a trash bag in it. Twice he has attempted to put the big swinging lid into the dishwasher and once I found a full bag of trash sitting on his bed. Another example, he tries to set the table but asks at least 4 or 5 times, “How many of us will there be for dinner?” NEVER will there be an entirely correct table setting. Napkins, forks, spoons, (we only use knives when it’s absolutely necessary with Dad and 4 kids at the table) glasses, etc. something is always missing somewhere. And there is a 50/50 chance that he will simply wander back to his chair in the living room mid-task, forgetting what he was doing. To relieve his embarrassment and frustration, the boys go behind him and correct each place as needed and they now make the drinks for everyone.

It is so frustrating to be in the kitchen trying to get dinner for 7 or 8 people ready and hear, “Let me know if there is anything I can do to help!” dozens of time each evening. Knowing that there truly isn’t anything he can do to help without him getting frustrated and confused which leads to hostility and anger. With Alzheimer’s, you are in a constant no-win situation. I can’t imagine anyone who is sweeter or wants more to help than Dad. He is grateful for all that I do and tells me repeatedly every day. He tries so hard to do what he thinks is the right thing, and like a child, he glows under praise and positive reinforcement.

I am hoping this medication will help him enough to allow me to assign simple tasks to him. He NEEDS to feel useful. It gives him purpose and makes him feel like he is a functioning member of our household. It helps to keep him connected. Moderate Severe Stage Alzheimer’s comes equipped with disassociation and my goal is to keep him connected with every aspect of life for as long as possible. Our road is hard but we are walking it together and as long as he lives, I will continue to have HOPE. Hope that he can have a few more really good days and a few less really bad days. Hope that I can slow down the progression of his disease. Hope that he will always know that he is loved…

Making The Right Call

April 4, 2010

Dad is aware that something isn’t right but he can’t pinpoint it. One major change we are making is backing down his sleeping meds and his anti-anxiety meds. He sleeps the majority of the time and I can’t help feeling that it is because of these 2 drugs he is taking. I have to urge anyone who is thinking of making a similar change to discuss it with your physician. NEVER make a med change without medical guidance it can be extremely dangerous!

On the subject of medication, do yourself a favor and get to know the meds. I research every new medication. I want to know side effects, drug interactions, how long it takes to get into the system and how long it takes to get out. With each new prescription I ask the doctor what it is being used to treat specifically. This can be essential because many drugs are used to treat different things.
Watch for possible side effects, remember, a demented mind can’t necessarily distinguish how they are feeling. They have to count on you to make judgment calls for them every day. Some days, you may only get one chance to make the right call. It is a heavy responsibility. You have to be their eyes… and ears… and memory…

10 Dementia Elderly Recommendations

1. Consider buying Long-Term Care Insurance while everyone is healthy.

2. Consult an Elder Law Attorney to get all legalities done right: Durable Powers of Attorney for Health and Financial, as well as Living Wills, Trusts, etc.

3. Realize when your elder says and does things that strike you as strange or illogical or irrational ¾ they are! Don't wait and just chalk it up to old age or second-guess yourself. Call the Alzheimer's Association (800-272-3900) and ask for a referral to a neurologist specialized in dementia who will perform a battery of blood, neurological and memory tests to accurately diagnose what type of dementia it is.

4. Ask the doctor about the medications: Aricept, Exelon, Razadyne and Namenda, which can mask and slow down dementia symptoms, keeping a person in the early stage longer. Make sure vitamin B-12, folate, thyroid and depression are checked, which can cause dementia-like symptoms. Have the doctor evaluate all medications for interactions. Optimize nutrition and fluid consumption.

5. Ask the doctor to consider prescribing an anti-depressant for your elder if needed, which will help to smooth out bad moods. And if you need an anti-depressant for yourself-get one!

6. When dementia surfaces, live in your elder's reality of what is true for them at the moment. Don't argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.

7. When illogical demented episodes surface, realize that your loved one may be trying to work through unresolved issues of a lifetime. Validate their frustrated feelings, go with the flow, and don't contradict, which may help them bring some degree of closure to difficult past experiences.

8. Enroll your elder in Adult Day Health Care, if possible, where professionals are trained to manage dementia patients. By maintaining a daily routine and keeping loved ones engaged during the day everyone will sleep better at night.

9. Call your Area Agency on Aging and the Eldercare Locator (800-677-1116) for resources, and attend a support group regularly.

10. Shift your perspective to being grateful for the lessons you are learning, even though they are hard. Celebrate the life that is left and stop focusing on the dying. You are required to make sure your elderly loved ones are safe, that they have good doctors and the right medications, but you are not required to let caregiving destroy your life, nor would they want that for you.

By Jacqueline Marcell