Hubby with AD

[JanM]

My husband was told he has the early stages of AD about a year ago, he was 78 at the time. Was put on Aracipt (spelling ?) at the VA. He got sick to his stomach and had to stop taking it. His PCP (a private dr) tried it again a couple months ago and we told her that he got ill with it, but she asked him to try it again. He got sick again. Now the PCP has him on Namenda . He is in his second week 5 mg in the a.m. and 5 mg in the p.m. Does anyone have experience with this drug? I are going through some difficult times with him and his temper lately. Sometimes I just want to leave! :(:(:(:(:(:(:(:(:(

[Tootsie]

Hi Jan,
Welcome to the Alzheimer's Disease Forum here at Braintalk Communities. As you may know, this forum had a dramatic and total crash this past summer and is just now becoming active again. There are many who will be coming by soon, besides me, to offer their opinions and experience.

I have had no personal experience with either of the drugs you mention but have read in various publications that for some they do improve the ability to function and for others they are a waste of time and money.

Are you in some kind of clinic or program at the VA where the professionals have experience with AD? Many times, medications are given to the AD patients so that the caregiver gets some relief. It sounds as if you are in need of such medications to give your husband.

What kind of behaviors are most troubling?

Do you have some kind of support? Children, neighbors, church/temple or other fraternal groups that you can rely on? What are the agencies in your community that sponser Day Care, respite care, household help, etc?

Have you a Power of Attorney so you have control of money to purchase the care your husband needs? Do you have a Durable Power of Attorney so that you can make health care decisions for him?

One of the most useful things I found was using a small, spiral notebook that I kept in my purse. In it I had Social Security Card, Medicare card, Railroad Disability card, bank account numbers, name, address, and phone numbers of banks, doctors, my mother's close friends, etc. All the information was in one place and it was always where I was. It saved me many minutes of frustration and aggravation in dealing with all that was involved. Cheerio.

[JanM]

First of all there are NO support groups in this area. I feel like a leaf in the ocean. He seems to think that because he has AD he is the only one that is affected by it. He has been angry with me for a week now and no matter what happens, it's my fault. He is taking an anti-depressant and pills to help him sleep at night. The VA physciasist (SP?) has confirmed he has PTSD and has had it since his days ioverseas in the firefights following WWII. Of course, all his reconds have been distoryed so ha can't prove it. If I go to the VA dr with him, he gets angry afterwards if I mention his behavior. I do volunteer at our local hospital just to get away. God will get me through this, this I know!

[Tootsie]

Jan, I know that you will get through this period of time, as all of us have survived, in any way that we can. It is unfortunate that there are no support groups in your community, as they can definitely give you that wonderful feeling, that you are not alone.

While there are some principles and situations that are common among all AD patients and their caregivers, each one is also unique and different. You will need to find your own way through some challenges. Let us know how we can help.

First of all, you have to realize that your relationship with your husband has changed and therefore it is you who must adapt to the situation. He has no ability to do so. Sometimes you will be caregiver, mother, sister, enforcer, or servant. Perhaps all in the same incident. He has no capacity for reason or logic so don't try. It will simply be an exercise in frustration.

One of the hardest things I had to do, was learn to lie to my mother. She would fuss about something and I would simply apologize.."oh, yes, I forgot but will do it tomorrow." At the residential care home where I was forced to place her, she would fuss that, "these people gave me lunch and I don't have any money to pay them!" "Oh, don't worry, I have your check book and will take care of it before I leave." ETC.ETC.

When your husband blames you for everything, just accept the blame, and even apologize. His anger is part of the disease process, and should not be interpreted by you personally. You know, I know, and everyone else will soon know, that he has dementia, and you are avoiding conflict and aggravation for yourself. It sounds awful, manipulative, and arrogant, but it will work better than the alternatives. You will soon learn to say, and do anything, that keeps some kind of equilibrium and balance in your life together.

Apparently, he is still able to be left alone so that you can get out of the house and do something that you enjoy and is of use to others. That is valuable and something that you should continue as long as possible. Is there some kind of physical activity that you both can participate in? A walk in the park, visit to the mall, etc. Sometimes that type of thing can help with sleep at night.

I know a little about PTSD, mainly from a friend I met here on Braintalk. He told me that any kind of stress seems to aggravate it, so keeping things on an even, emotional level, may also help his difficulty with that issue.

Let us know what else is on your mind. Cheerio.

[JanM]

He is very functionalbe. He drives, walks the dog for 1 - 2 hours, does chores around the house, interacts with others. If he didn't tell you, you most likely wouldn't know he had AD. He knows me and although he sometimes forgets names he knows other people. He does forget things I have told him about and get angry if I told him that I already have told him something. He is in the early stage and the VA dr told him that he most likely will not have to worry about going to a care facility. I have gotten him to do email, just reading and passing on jokes, to get him to learn something new. When he messes up his computer I fix it and DON'T get upset about it. We recycle cans and he collects them as he walks the dog. I guess there are times I just want to bang my head against the wall. But what good will that do, I'll just have to fix the wall!

[Tootsie]

Hi Jan,
It does sound as if your husband is still able to function fairly well, on his own. When he begins to get lost, cannot remember how to navigate around town in the car, or wanders during the night, you will have to do something to control the situation. I sincerely hope, that those things never occur.

In the support groups they discuss how to disconnect the distributor on the car, so it doesn't start; how to have the gas company modify the stove so it requires special sequencing to turn it on, etc. AD patient's cannot perform a 3 step process. One of the screening tests internists use is, they hand a patient a large sheet of paper, tell them to fold it in half and put it under their chair with their right hand. They will miss one of those steps.

You certainly have the right idea...walking the dog, collecting cans, etc. One woman used to mix up all the beans from packages and tell her father that they got all mixed up when the bags broke. He would happily sort them out. Someone else had a small vending machine business and her Dad would spend hours, sorting and wrapping the coins for the bank. My BIL was in a locked facility. His long time companion used to take him large Lego type blocks, that he and another man enjoyed building with. We ate a lot of chicken soup when my mother lived with us! I would boil a whole chicken and when cool she would take the meat off and dice it up for the soup. Folding towels was another household chore she could do.

The most important thing is to do everything you can to keep yourself happy and healthy. Cheerio.

[LEW]

Hi Jan & welcome!
Tootsie has already given you some very good advice - especially when it comes to making sure you treat yourself well. If you bang your head against the wall, not only will you have to fix the wall - you will end up with a really nasty headache! It won't make things any easier for you to deal with if you have a headache, so try to find another outlet for your frustration if at all possible.

On the bright side of this, your husband is very functional. You don't have to care for his needs 24/7 and you are still able to get out and do things on your own without having to worry about him. If his temperment becomes too much or if his anger is directed at you, take a time out! If it is out of control, speak with his doctor - in private, if you are afraid of your spouse's reaction.

My Mom's former doctor prescribed Aricept for her AD symptoms a couple of years ago. She didn't get sick from it but then, it didn't help her AD at all, either. Her new doc wanted to try Excelon but it was too expensive for us. We haven't tried Namenda but I have heard very good things about it from a friend whose father had been taking it for at least a year for his AD. The thing with these AD meds is that each of them works in slightly different ways. Most work the best in early stage AD patients and do little or nothing if started too late in the progression of this disease. They are not a cure, however, but in many cases they can significantly slow down the rate at which the patient's brain cell death is occurring prior to treatment. If one doesn't work, try something else.

Another thing I heard about my friend's father's experience Namenda was that his progression was slowed way, way down and she mentioned that she was also giving him a large amount of antioxident vitamin and amino acid & enzyme suppliments every day to help combat the disease. I have read that in many cases, suppliments including: d-alpha tocopherol Vitamin E, ALA, & Co-Q-10, have shown great results in AD patients during research studies. Unless the VA doctor your husband saw (or his PCP) are neurologists who are staying current with the latest Alzheimer's research, they won't be able to tell you much about the benefits of this sort of antioxident therapy, but they won't argue that antioxidents are beneficial to everybody, either! In AD patients, they help reduce the build-up of plaque that triggers brain cell death and helps to fortify the cells' overall strength. In any case, it is certainly worth trying if you can talk your husband into taking the vitamins.

Hang in there, Jan. Don't let his anger get to you. Come here and vent or ask questions all you like. I never joined a support group, either - except for visiting this board every now and then. I'm not much of one to sit in a group, talking about problems. I am too much of a loner. Now that Mom is getting to the point where I need to be here nearly all the time, going to meetings for support is no longer a freedom I could indulge in, even if I needed to. Still, this board is a source of comfort to those of us who need to connect with others who have been down this road before us or who are journeying down the same path right along beside us at the same time. It helps to know you are not alone and that there are people who understand and relate to the things you talk about. We are here for you - for each other.

LEW