Saturday, April 14, 2012

Holidays and Alzheimer's Disease

My husband has had a diagnosis of Alzheimer's Disease for the last 5 years.  We have had lots of experience with family gatherings and care-giving during that time.  I have learned that it takes a lot of  planning to help keep him comfortable.  Every situation is different of course, but for my husband, he does better with structure and a schedule that is predictable.


My family certainly does not qualify for structured and predictable, but after some wild learning experiences, I have learned a few things.  Of course, the disease is in continuous flux, so nothing is set in stone.  Flexibility is key.  He does better when we are at our house because of the familiarity.  Traveling or going to someone else's house takes another plan.  Since he can't remember the details, but he does seem to recall some of the plans, he will need to reminded over and over.  I try to start our conversations with the information he seems to be struggling with, such as, who will be coming, when they are coming, etc.


The noise and commotion along with the disruption of his schedule are our main problems.  I keep his morning schedule as uninterrupted as I can. No matter what, my husband has to start his day the same way every day.  I think of it as a computer rebooting.  He gets his coffee, get dressed, washes or puts dishes away, and then makes the bed.  He will eat his breakfast when someone gives it to him and then takes his medicine.   He does a lot of walking around between tasks.  This usually takes a while, but some days can take longer, so that has to be a part of his schedule.  If he is interrupted, he can have a meltdown or a catastrophic episode.

Since it is Easter, I will make sure our clothes are ready the day before and have as much of the dinner made ahead.  I also have other family members bring parts of the dinner.  Simplicity is my theme song and organization is my friend.  The most important thing I can do is to stay calm and in control.  I get up a lot earlier than my husband normally, so I try to do a lot of the preparation ahead of time.  We have in-home health care while I am at work, so I try to run my errands ahead of time while he is with the care-giver.


I keep our bedroom ready for him so he can go in and shut the door if he needs to get away.  Other family members can step in with dinner preparation if I need to go sit with him.


Many of the family live a distance away, so there is lots of visiting and catching up.  We have an egg hunt with prizes for all.  We try to keep things fun for all, from the little ones to the eldest.  If things don't work out perfectly, we don't make a big deal of out of it, we just try to make him comfortable and move on.  That is the flexibility.

3 comments:

  1. Debbie,

    Even knowing you and Jim and seeing you every week at church doesn't reveal the full story.

    I admire both of you and great deal (and pray for you as well) for the ways you've found to persevere.

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    1. Thank you Carrie. I wanted to start this blog to encourage and support other caregivers that deal with this horrible disease. Of course, I try to continue to gather as many caregiver skills as I can to use with my husband. The frugal part of the blog enables me to share the creative ideas I have discovered or learned from others. Thanks again for your support and prayers, Debbie

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  2. You're doing a good job both on the blog and with your husband. It can't be easy.

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