Thinking Time

I don't know about anyone else, but I do a lot of thinking when I'm vacuuming.  Can't hear the tv, can't hear the telephone.  Gives me probably the longest uninterrupted block of time I can get now.  So, yesterday I was vacuuming (read as thinking) and these are some of the things I was thinking about.

One of the biggest issues with being a full time caregiver (24 hours, not 8, like most full timers) is loneliness. Well, loneliness and exhaustion.  Everyone from the doctors to the mailman say, "Take care of yourself;  take time for yourself;  On airplanes you always put the mask on yourself before the baby (my favorite)."  I'd love to. I try to.  But the reality of the situation is that K (hubby) really doesn't do well alone for long blocks of time.  I actually have gotten invitations from friends to go to gatherings - for me.  Not for us.  I'd love to.  Try explaining that to someone who can't understand that I occasionally need to go to the doctor alone.  He really is totally unaware that he is not the same person that our friends have known for years.

I have tried to get time for myself - I spent a month interviewing Adult Day Centers and finally decided that the Alzheimer's Day Center was the best possible situation for K, even though he would not stay for more than 2 hours at a time.  Two hours that I spent at the library immersing myself in art books and enjoying the quiet.  That lasted a month.  Then K refused to return.  I don't know why, he can't explain it beyond "I don't want to go;  No, I won't go."  When he says no to something, try to get him to change his mind.  The best I and the director can come up with is to take a break and try again later, which I will.  I miss those 2 hours, 2 days a week.  It was like a mini-vacay for me.  I can sympathize with K, though.  Everyone else in the Day Center has Alzheimer's.  K paces, but with intention, not just wandering around.  You can't put him in a chair and have him participate in "discussions," or do all his exercise in a chair.  He has very limited ability to follow conversation now.  He just wants to tell "his stories" over and over.

People really don't understand why I don't always do the things they want me to do, or the things they think I should do.  I try, truly I do.  But the stress of the situation has effected my memory and my energy in dramatic ways.  When we go out, I have to constantly be aware of where he is.  If I have even a short  lapse of attention, he can be gone.  We do go out and do things - museums, plays, concerts or just shopping and he loves to go.  But for me those are times of heightened stress - I never really know how things are going to go.  But he is usually ready to leave long before the play is over, or I am ready to leave.  Even going to visit people is like having a four year old saying every couple of minutes I'm ready to go now.  When we're at home, it's a little better.  But if others have heard his story 10 times, I've heard it 50 times.  It can be exhausting having someone talk non-stop AT you.  Anyone who has raised a toddler can agree with that.

People have the best of intentions and I hear a lot "I'll do anything you need me to do."  What I need is a break from the loneliness - a telephone call, a visit, a card.  Anything that lets me know that people are thinking of us.  I know in my heart they are.  They may think oh, she has enough going on, she's probably too busy, too tired to talk.  But those are the very things that renew me.  I don't have conversations in my own home anymore.  K isn't capable of discourse any more.

If someone was going into this situation from the beginning and needed advice, I'd say - the most important thing you will need is a support system.  God truly has blessed us with all the professional support we will need for the long haul.  We have a wonderful PCP, thanks to our daughter-in-law;   wonderful attorney who specializes in just this situation;   some of the best specialists in the US; personally I have a compassionate and knowledgeable counselor and a massage therapist who not only keeps my body moving, but also listens with a loving ear.  In addition she has a sister who works in this field and now does home health care for Alzheimer's and dementia patients.  So I have a contact to get a recommendation for home health care.  I've also been blessed with a wonderful family.   I need them more now than I ever have and I know that they are always there for me.  All I have to do is see or hear from one of the grandkids to light me back up and keep me smiling for the day.

Well, I've gone on and on today.  I'm trying not to whine, but if you have someone in your life who really doesn't know how to help you, use this mess as the conversation starter.  Many, many caregivers on the support groups write these same things time and time again.

I think I'll go vacuum.  Love and peace.  Mary