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January Check-In
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Judith L London, PhD posted:
Hi Everybody,

Is anyone up for a January check-in? Is taking care of YOU one of your New Year's resolutions? I know that I have to remind myself of that often.

Let us know what's happening,
Judy
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cjh1203 responded:
Hi Judy.

Unlike many of the people who come here, I'm not a caregiver. I first came to this board to ask a question regarding my uncle, who had Alzheimer's, and whose wife was his caregiver. I was always trying to find out things that might help them and make life a little easier for my aunt.

I've learned a great deal about Alzheimer's from people here, and from doing research when someone came here with a question or problem. My heart has broken for so many of the people who have passed through here.

All of the regulars seem to have gone missing for the past couple of months, and I wonder about them often. I guess that's one of the tough things about a board like this -- when you stop hearing from people, you never know why.

Anyway, you are so right, Judy, that caregivers tend to ignore their own health and needs because they often just don't have the time to think about themselves, or they feel selfish if they do. I saw in my aunt that taking care of my uncle was having a terrible effect on her physically, mentally and psychologically, but nobody could convince her to accept help until shortly before my uncle died.

Do you have an Alzheimer's patient in your family, Judy? From your post, it sounds as though you may be a caregiver yourself.

Happy new year to everyone. If any of the old regulars are reading this, I hope you'll let us know how you're doing. And, of course, we hope that new people will look to this board for advice and support -- we'll do our very best to help.

Carol
 
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An_242523 replied to cjh1203's response:
Hi Everyone,

I had to re-register since I changed my email address.I did not want to, but I finally did.

I am having trouble with my husband who is my caregiver. He does not know what to do when I make a request. He gives in to every thing I say.

I do not know what to do. Do I sign myself into a retirement home to make it easy for him? I do not want too.

I looked at his computer and found Alzheimer's. I checked to see what he found out. He had down all of the negative things about Alzheimer's. Nothing positive.

My husband does have my son to give him a break.

Ruth
 
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An_242523 replied to An_242523's response:
Hi Carol and Judy,

Since I had to re-register, I noticed that my picture is no longer there. How do I get to my profile to put in a picture?

Carol, here is something important for a caregiver. I feel that it is the most important thing there is with Alzheimer's.

It is the legal matters. It is best to take care of that while the person is in the early stages. That way you can find out what the person wants.

I made out my legal papers in 2007. I was diagnosed in October of 2011. My legal papers are still good, since I made them out four years before I became diagnosed with Alzheimer's.

I believe that is important for everyone to do, good health or not. You never know what is going to happen down the future.

The link is: http://www.ahaf.org/alzheimer's/livingwith/legalmatters.html
Please look it up!! I have read what caregivers go through and legal matters are the main one.

Ruth
 
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cjh1203 replied to An_242523's response:
Hi, Ruth. It's good to hear from you!

It's been a while since I put my picture on my profile, but I think that all you have to do is click on your user name in any of your posts. That will take you to a page where you can edit your profile, and you can click on "change my picture" and then follow the instructions.

You're definitely right about making sure legal documents are all in order. I took care of that several years ago -- medical power of attorney, living will, general power of attorney, will, etc. Unfortunately, my husband hasn't done any of that yet. Since we're both 60, he needs to get those things done.

You're also right that it's something Alzheimer's patients especially need to have in place. It's good that you did that so long before your diagnosis.

How have you been doing? Are you still on oral Exelon? Do you think it's helping?

I hope you'll stay in touch. I've missed hearing from you, Dave, Odie, Marilyn and others.

Best wishes.

Carol
 
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balmayne1 replied to cjh1203's response:
Hi Carol,

I did put in a picture in my profile. I will see if it shows up here. If not, I will try your suggestion.

I am doing all right on the oral Exelon. I believe it is helping.

My husband has not done any legal documents either. That worries me. I have talked to him about it. He just says when the time comes it comes.

That means that I will have to get an attorney and have a friend or relative sign it for him.In CA, we will have to have a hearing in court.

It would be so much easier if he did it now. You never know what is going to happen. My doctor died at the age of 40 in a car accident. People are not watching the road while they drive. My husband does, but that will not prevent him from being severely injured in a car accident.

He is 70 years old, now. He is still healthy, as far as I know.
 
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cjh1203 replied to An_242523's response:
Hi, Ruth. I had missed your post about having trouble with your husband not knowing what to do when you make a request.

In reading your posts, I don't think anyone would ever guess that you have Alzheimer's, so your requests probably aren't much of a problem right now. There may come a time, though, when you're asking for things that aren't in your best interest, or not wanting to do things that are. If that happens, he needs to know how to handle it, rather than just giving in.

If you could get him to go, it might be good for the two of you to join an Alzheimer's support group. Your husband could learn so much about Alzheimer's and caregiving, and you could both get emotional and practical support from people who have been traveling the same road. It might also help lessen the fear both of you may have for the future.

I see in your most recent post that your husband has refused to get his legal documents taken care of, and that must be really frustrating. I think that some people think it's tempting fate to make a will, etc., and some people just refuse to face the fact that some day, they're going to die. Could you let your son know how much this bothers you, and ask him to talk to your husband about it?

You've heard this before from this group, but I have so much admiration for the way you're facing your disease. I wonder if that's part of the reason that it seems to be progressing pretty slowly (at least as far as I can see here). As I said, if you hadn't told us you have Alzheimer's, I never would have guessed.

I'm glad the Exelon seems to be working.

Carol
 
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balmayne1 replied to cjh1203's response:
Hi Carol,

We live in a small town with small towns around us. I will check and see if they have an Alzheimer's support group somewhere in the county. That is a great idea. I will check with the Senior Center, they always have great ideas.

My son has his legal documents. He knows the importance of it. He is going to have to change his, though. I am the one who is signed as the one who will decide his medical descions. I will not be able to anymore. I will have him ask to change his papers to someone he can trust. There are many people in our religion who will be glad to do it.

In some ways, I am getting worse. I have noticed them and my husband and friends overlook it. I will change to these conditions and see if it helps.

My husband took out the shower glass and put in shower curtains. They work just as good and are safer. I have a tendency to fall. I had a fall once and it was in the shower. I fell right through the shower curtain. If I had fallen through glass, I might not be here.

Glad to be here,

Ruth
 
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cjh1203 replied to balmayne1's response:
Hi Ruth-

I hope you're able to find a support group -- that would be great for both you and your husband.

It's good that your son is so conscientious about his legal documents. Maybe he can convince your husband he needs to get his taken care of because it's causing you stress that is not good for you.

I'm sorry that you think you're getting worse in some ways, but I guess it's good that you recognize it so you can try to make adjustments for it.

Replacing the shower glass with a curtain sounds like a great idea! Do you have a grab bar in your shower? When I had a hip replaced a couple of years ago, my husband got one for me and, even though I haven't had a problem falling or losing balance, it makes me feel better to know it's there. He got it at a local medical supply store -- it's the kind that attaches with strong suction cups, so it will work on any surface and doesn't require tools.

I'm glad you're here, too!

Carol
 
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balmayne1 replied to cjh1203's response:
Hi Carol,

Right now the changes are small but even my husband and my friends notice it. They do not say anything and come and visit me when they notice a notable change.

Like, I wanted to say one thing and another came out of my mouth. I realized it afterwards. That was at one of my meetings. We make comments, if we are called on. I knew the answer and said the wrong thing. That is one of the changes. I do not know how many times that has happened.

I looked at my previous post. It looks like I said that I do not have an Advance Directive. I do. My husband ls my health care agent. He will do what he has to do. He has my permission to put me in a home when he can no longer take care of me at home.

I have grab bars in the shower. We hired someone to put them in. I feel that the ones that go in with the screws make me feel safer.

Here is a link for legal matters:

http://www.ahaf.org/alzheimers/livingwith/legalmatters.html

Everyone should have an Advance Directive, no matter what their health condition. You never know when something will happen.

Ruth
 
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2010guardian responded:
Hi Judy,
This is the first time I've been on this particular page. I am a 75 yr old caregive of my 74 yr. old husband who is in moderate stage Alzheimers. He also has diabetes.

At first I felt that I should give all my time watching over my husband and not going out with friends. One day I was reading on Web MD and found that the #1 mistake caregivers do is to ignore themselves and give up socializing.

I am a Red Hatter and I gave up going out with the girls once a month because it was usually for lunch and I felt I needed to eat lunch with my husband. I had not discussed this with him.
After I realized what I was doing to myself, I talked it over with my husband and he said he wanted me to go out and enjoy myself. Now, even when I would rather not go out, I force myself. I enjoy the girls when I get there and feel better when I get home.

A Community Health Representative from my husbands Tribe, comes to visit him every Tuesday. She helps him with his distribution of daily meds in his pill box and takes his vital signs. Now she has begun to take care of me, monitoring my vitals.

This is a great comfort and support system for both of us. There is an Alzheimers support group in our area. I have talked to them and was told it is only for caregivers. My husband said he wanted to attend also. I am concerned that he will here all the 'horror' stories and get depressed. Should I take him anyway? Thanks for giving me this opportunity.

Guardian
 
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2010guardian replied to cjh1203's response:
Carol,

I'm new in this discussion. I, too, have my legal papers in order. We were advised to make sure that the medical power of attorney was a Durable medical power of attorney.
I review our papers often. We, too, drew up our papers several years ago before my husband was diagnosed with Alzheimers. When I made additions to our living trust, I typed them out as a supplement and had my signature notarized. I did get an attornies advice and this seems to be a legal procedure without going through an attorney.

Guardian Kathy
 
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balmayne1 replied to 2010guardian's response:
Hi Kathy,

I am glad to hear from a caregiver. My husband is my caregiver.

I have tried to go into the caregiver's section here, but once they find out that I am the one with Alzheimer's, they will not talk to me.

It is sad but Alzheimer's is "still in the closet." I tell everyone anyway. If your support group is only for caregiver's, I would not take him with you. They will only tell him to leave. That would hurt him more than help him. Put him in here where he can talk to us.

Do you get your husband to socialize? It is very important that he does. Maybe you can take him out to breakfast or a picnic once in a while. Even just going for a walk will get him out of the house.

Ruth
 
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2010guardian replied to balmayne1's response:
Thank you for responding Ruth. It says a lot for you that you can verbalize so well. My husband is losing that ability.
Yes, we do socialize. We eat lunch with the Indian community five days a week. We have friends at each location. I always try to have my husband to sit by the men and most of the time, he can carry on a conversation.

We also have young grandchildren who love to spend the night with us. I feel this is important not only for my husband, but for the children to remember the good times with grandpa. We do go out to eat once in a while. We recently celebrated our 53rd wedding anniversary. We have 'Wellness Centers' available to us with all kinds of exercise equipment. I encourage him to do as much exercise as he can. He has poor circulation in his legs due to diabetes. He is improving.

It is sad that there aren't support groups for the Alz. patients.
He will not sit at the computer with me with the exception of less than 5 minutes looking at family/friends notes and pictures.

I pray for encouragement for you and for your support.

Kathy
 
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Judith L London, PhD replied to 2010guardian's response:
Dear Guardian,

Hurray for you for taking care of yourself. I'm so glad you resumed those luncheons with the girls. Being with people is so important, for both you and your husband. I used to lead support groups for people with Alzheimer's and know how important that is.

Check with your support group leader and contact the
Alzheimer's Assn. www.alz.org or 800-272-3900 - they have groups for your husband. They also have online services for him
. Also check out your local Veterans Administration. They sometimes run groups for couples regardless of former military status.
Some communities have become part of a movement called the Alzheimer's Cafe where those with Alzheimer's can stop by and be welcomed.

If there are no groups for him, consider asking your support group members if your husband could visit, and they could tailor their comments accordingly.

Let us know how this works out for you,

Judy


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