GOOD TIMES, BAD TIMES

I guess we have settled into living with dementia. Some times are good and some times are not so good.

The other day some ladies were here playing bridge. It was my time to bid and James came wondering in from the bedroom and stood behind me. He said “You're not going to let her bid are you? Especially with that hand”. And we all laughed; that is exactly the kind of thing he would have said before he got sick.

A few days ago my friend, Karen was saying how upset she had been but she went home and talked it over with her husband and then felt better about the whole thing. That was a little unexpected knife thrust into my heart. I will never again be able to talk things over with James and feel better about them. Not Karen's fault – just a fact of life with dementia.

I still thank the Lord he is easy to get along with. He has gone down physically a little more. Doesn't walk as well.

We are having a wedding in the family this Friday night – our daughter's daughter. There are all kinds of contingent plans made for James. If he gets restless at the reception or whenever, our son will take him home and stay with him and I can stay for the festivities. And I expect that to happen. His patience are thin and he gets bored easily when he is not at home in his own little nest. He won't remember the wedding by the time he gets home and we could easily get someone to stay with him but then we would not have him in any of the wedding pictures.

There is a picture of my grandfather who died before I was born. Every time my mother would see that picture she would remark, “That was taken after he got sick”. I think James in these wedding pictures might be like that.

GOOD NEWS

More neurological testing but this time we got some reports back.

He has a mixture of Alzheimer's and vascular problems having to do with his heart.

Biggest problem is memory.

He doesn't recognize that things have changed and is overwhelmed by all that is out there. Can't make decisions because too many choices. The reason he sometimes wants us to decide where to go and what to order for him.

Language ability is still good.

Thinks much slower than other people. It is like he is running to keep up.

Lives in the moment. No tomorrow and not much yesterday.

I asked if we could expect him to remain easy to get along with or if we should expect aggressiveness and possibly the violence we hear so much about. She said she had seen many patients remain easy going for the entire illness and since he had not had personality changes by now there is a good chance he will remain as he is. Thank Heaven.

His attitude has been the biggest blessing we have had and it is such good news to think we might continue to have it.

We have had many blessings during this and I can't help but believe it has to do with all the prayers I know are said for us; I thank the Lord as well as all the family and friends.

YEA! YEA! YEA!!!

It finally happened! I have gotten respite care. It is through the VA. We only get 2 ½ days a month; it may not sound like much to you but it is a lot bigger number than 0. I have been working on it since February. I am still working on more but am also celebrating on this. Yea, yea, yea.

I AM JUST ABOUT WORN DOWN

As most of you know, I am trying to get some kind of periodic respite care for myself without putting James in a nursing home. So far I am unsuccessful. I am fairly intelligent. I am fairly articulate. Yet I feel that half the people in the U.S. with half my intelligence and half my verbal ability have managed to get a whole lot of what I want just a little of. How is this possible?

 

 

 

 

RESPITE

Thank Heaven for family and friends. 

My children, my doctor and my pastor have been on to me about getting some time off from caregiving.  And I am working on it. 

I started realizing how right they were when I began to be aggravated at people over trivial things.  A lady sat down beside me and she had on sandals and had a French pedicure on her toenails.  I thought to myself “well la-t-dah, look who  has time to have a pedicure while others of us have to live in the real world”.  I realized while I sat there that it was a stupid attitude on my part but I still felt that way.  I also got aggravated at a man telling me about his bad cold when my husband has everything in the world wrong with him – none of them curable.  It was only by the grace of God that I did not say anything sarcastic.  I am very talented at sarcasm.

When you have been out of circulation for as long as I have, it is hard to get back in.  I have a lady coming to stay all day with James every other Thursday.  She is an experienced caregiver.  I plan to get together and paint with some people I used to paint with.  The first day is day after tomorrow.  Fingers crossed. 

I am going to take beginner bridge lessons on Monday mornings.  I don’t have a firm commitment for those days but one of the Methodist Men is staying the first day and I am planning for the other days to fall into place.

The Methodist Men have been so wonderful.  They have been picking him up and taking him to their once a month meetings for a couple of years now.  And some of them come get him to go to lunch and do errands.  He is a little bit more trouble now since he is on a walker but no one has complained.  They have been a God-send for me. 

Of course my children have been wonderful.  Missy spends one day a month with him and Laurie spends one day a month with him.  They do odd jobs while they are here, tidy the kitchen, lay out Jas’ medications, etc. – so much help.  Drew comes down and spends a day often and does “fix it” things, services my car, changes light bulbs and heater filters and nails things back together that have come apart.  He nearly corked himself working on the sprinkler system last Summer.  Then they took turns last Summer and gave me a week off for a road trip with my cousins.  I had never done that before and I just loved it.  One of our granddaughters is living with us until May and she has been so much support.  They have saved me; if they had not been doing this, I would have been committed by now.

I have already had lots of support and really do appreciate it.  A caregiver needs lots of support to stay sane.  And I plan to stay sane – at least as sane as I have always been.

OUTSMARTED MYSELF ----- AGAIN

Do you ever outsmart yourself?  I do.  We finally got James to quit drinking a six-pack of Budweiser every night.  We switched it to O’Douls which is non-alcoholic.  So now he doesn’t walk into walls and fall on the way to bed.  I was afraid he would fall and break a hip and then be bed fast.  When I would bring in hot beer I would usually put a couple in the deep freeze to hurry and cool off.  So I put in a couple of O’Douls the other night.  He did not drink them and the next morning they had frozen and exploded all inside the deepfreeze.  He kept saying he did not think beer would freeze.  I kept saying I didn’t think it would either.  It finally dawned on me – no alcohol it freezes!   Duh!!!

A SAD DAY

Spent the whole day in Dallas at doctors Tuesday.  Exhausting.  Got another neurology opinion.  She agrees he has all the signs of hydrocephalus.  But she does not recommend treating it.  With all the other things wrong with him the improvement would be so minor and the treatment so invasive.  They would drill a hole in the skull, go down into the center of the brain where the fluid is and put in a shunt from there down through the neck and into the stomach to empty the fluid into the stomach.  She said she would do whatever we wanted.  The children and I had already agreed that he had been through enough torture.   When asked what he thought, he said he would do whatever we thought best. 

I asked why it took him so long to stand up from a chair; she said it was part of the Parkinson’s and also the  neuropathy (I hope I have the right word here – lack of sensation). 

A sad day.