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Old 04-03-2005, 10:09 PM   #1
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Question Progression of AD question

I've posted questions in the past and everyone has been so helpful. Now I've got another one.

Dad was diagnosed with AD almost 2 years ago. He is just 62. He progressed pretty rapidly on just the Reminyl and so has now been on both Reminyl and Namenda for about 15 months. (He does still live alone, drives, etc although we have a system worked out where I call him 7 am and 7 pm to take his meds which are divided into 2 pill holders, white for morning and blue for night.) This has worked well so far as I live 2 hours from him.

Well, about 1 1/2 to 2 months ago he had what he calls a bad "spell". He said he got "loopy" feeling and felt really bad and also like he was going to die. After many discussions and a trip to the dr. we thought he had forgotten to eat. We discussed at that all the options, having someone move in with him, moving to where I live, or moving into a "retirement" center. He did not like any of these and got really upset so we agreed to drop it for a while and see how he did. Now when I talk to him I have him tell me what he has eaten and usually he can.

Now we come to this weekend. I've noticed that he is having more trouble with names of people he sees faily often. He is calling objects by the wrong name. He told me tonight that he had a really bad night. He went to sleep on the couch but woke up sitting in his bathroom. He said somethings that didn't make a lot of sense but what I could understand what that he said he felt like someone was trying to get him and that he was going to die. A friend of his came by this morning and he told him that he had had a dream that someone was trying to get him and that he had thought someone came into his house. He told his friend that he was really scared and his friend told me that he could tell that he really was. He also told me that he doesn't remember me talking to me this morning or taking his pills. I'm pretty sure he took what he needed to tonight but now I'm not sure about this morning. I'm really concerned about this turn. I don't know if it is "normal" of what happens of AD and if so does this mean he is going to start progressing really fast now.

Needless to say, I'm going up there first thing in the morning. I'm just don't know where to go from here and what the best thing to do for him is. This is so hard on him having to depend on me. I worry that I'm not going to make the right decision for anyone. I'm and only child. I'm married and have to girls (ages 7 and 5) and although they understand Grandaddy is sick I worry about how it would affect them if we move him in with us and then I worry about what will happen to him if I don't. I'm sorry this got to be so rambling, I think I just needed to get it all out.

If anyone has any ideas, suggestion, or comments I would greatly appreciate it. Thanks for taking the time to read this.

Oh one more thing. This time I know it was not related to not eating because when I talked to him last night he was eating and I had to call him back so he could have time to finish.

Thanks,

briesmom

 
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Old 04-04-2005, 02:55 AM   #2
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Re: Progression of AD question

Dear Briesmom,

You are a wonderful daughter to care so much for yur father.

But now it isn't enough.

You have a couple of options, and in my opinion (caregiver for 96 yr old Mom with Dementia) you really ought to choose assited living. If you can afford it, this is a good option. These are no longer the 'nursing homes' of old. There are wonderful caring paces out there where your Dad wlil be helped.

The night fears, forgetting to eat, waking up in the bathroom etc are all symptoms of greater confusion. I wonder if he ought to give up driving. What if he has an episode of confusion behind the wheel and forgets just what you are supposed to do when the light changes to red?

Or, as so often happens, forgets how to get home?

Even if he is saddened and upset by the decision, you may have to be firm and say "today we are moving to your new apartment". It isn't like a double room in a hosital, it is his own place, and there he will be monitored more closely than you can do from 2 hours away.

The other option - please don't choose it - is to move him in with you. Read the posts of Sally and Barb (Bosmom) and others who struggle with this every day, all day. It damages their marriage, their children and their own health. It is incredibly frustrating, you see only progression towards the inevitable, you don't see any positive results.(and often get flak from outsiders, including family.) Anyone would get sick and disgusted, and it supposedly also shortens your life.

My Mom is 96 and I was spared any of this kind of thing at a young age, as you are now, with small children. Your Dad is 4 years younger than I am. I feel so sorry for both of you and wish you every possible success in your quest. Get help - At LEAST a Home Health Aide for several hours a day .. but in reality, an assisted living faciity is the ultimate choice.

My Mom used to make up stories about eating. You can't believe he really ate. He may THINK he ate and even describe in detail some meal he had last week. Same for meds. Mom used to take them herself and insisted she had 'just taken it' even though the pill was still in the daily compartment.

This is the place to both 'vent' and get advice. Good luck!

Love and prayers

Martha

Last edited by Martha H; 04-04-2005 at 01:27 PM.

 
Old 04-04-2005, 11:31 AM   #3
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Re: Progression of AD question

Hi Briesmom,

I'd like to second what Martha said about moving your father into your home. It's very difficult at any time, but your children are too small and need too much of your time to take on a never-ending and ever-increasing amount of work that is more than 24/7.

Since your father seems to be so much worse suddenly, perhaps he should see his doctor in case these new problems are due to an injury he's forgotten about.

If you don't already have a Durable Power of Attorney, do immediately see a lawyer to got that done. You cannot make decisions for your father medically, pay his bills or handle any business for him without this legal paper. The need for haste is because the lawyer must be convinced that your father understands what he's doing in signing the paper giving you this power.

My mother was upset at leaving her home to move to an assisted living facility, but she was safe there, well fed, and had no worries or fears. She had a 1 bedroom apartment with her own furniture, too. It made her mad for a short time, but I also took her car keys because I didn't want her to become lost or cause an accident due to her confusion. It won't be easy or fun, but you must prevent your father from driving.

Good luck! Barbara

 
Old 04-06-2005, 12:49 PM   #4
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Re: Progression of AD question

Thank you both very much for you answers and suggestions. It really helps to know that you are not alone.

I think for right now just so that he can stay in his house longer I'm going to try to find someone to stay with him. But he seems to understand that if I can't he will have to go to assisted living. Or maybe I should say that today he understands that because based on previous conversations we've had tomorrow will most likely be another thing.

It is really comforting to know that this board is here.

I hope everyone has a great day!

Briesmom

 
Old 04-06-2005, 04:20 PM   #5
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Re: Progression of AD question

Remember Gone with the Wind?

Remember Scarlet standing on the hill saying "Tomorrow is another day" in her most dramatic way ........

It's like that for AD patients ....... the sun comes up and it's a WHOLE NEW DAY again .... bit like groundhog day too really !!

Can you tell I'm a movie buff ?? LOL

Briesmom, when I was approached by my FIL last year to move in here and help him and his wife, I looked at the situation and said "yeah.. won't be too bad, I can tough it out"

Well, almost 12 months later, I've toughed it out as much as I can, and although we DO have some good days, the bad ones are outweighing them. Living on the razor's edge of unpredictability is making me ill ..

I know we all have good intentions, and we want to do the best for our loved ones, but at what cost?? Your loved one is SAFER in a helpful environment, and if that's living in assisted care, then so be it.

That being said, it's easier said than done, especially if they're going to resist. It's EASIER to say "oh what the heck, they can live with me" but you can and WILL wear down.

The geriatrician here says the main reason people go into homes is because the carer is broken.

Don't let yourself get broken Briesmom (my youngest is Brianna, we call her Bree LOL)

Many hugs
Sally

 
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