I wasn't sure where to put this, so started a new topic. My daughter had a big cocktail party yesterday for all the neighbors here in Maine (she lives in Illinois). I noticed that included in the party were several women her age (50±) that she seemed quite close to. She told me later that during the preceeding winter these women had been e-mailing each other as a support group because all of them had mother's with Alzheimer's or some other serious problem. My daughter has had it particularly hard since she recently went through Alzheimer's with her mother-in-law (she died 2-3 years ago). I must say, I am really blessed in that our children (and their spouses) fully understand what I am going through, and do all they can to help. One son-in-law just did a major clean-up of our barn and breeze-way - something I have wanted to do for several years, but couldn't due to taking care of my wife.
Marsh, I am glad you are so blessed - so am I. We have one daughter who is now living with us and helping me with my husband; our other daughter is home for the summer visiting and has become her father's day caregiver - she takes him wherever she goes. I know how very lucky I am to have them. Our sons are supportive, and like bluedaze, I keep them in the loop.
My daughter and son-in-law are very supportive. They don't live close enough to be here physically all the time, and they have busy lives, but I've been very lucky. They "get it".
My therapist suggested that I go through all of the end of life decisions that I had been making "in secret" and it really did help to lower the anxiety levels. It turned out that both of them understand totally. Most of my decisions are pretty typical of what is in the Hard Choices book that several of us have mentioned before, but one might shorten his life if it should come up too soon.
It really does help to know that they are with me on those hard decisions.
What's this book about Hard choices? Is there a title? DH and I just went to an Elder Attorney yesterday and did some work on reevaluating our POAs, safety deposit box, etc. I wrote to all five of my children and told them what's what and that I had appointed the oldest two as POAs and if they were unable or unwilling to do that, to let me know ASAP so I could assign someone else. They all agreed and said to let them know where they could help and what I wanted done. I was so happy with their response.
One of my sons has cerebral palsy. He is completely independent and lives in his own apartment, has a nice job and has no debt. (That's pretty nice to hear in this day and age.) His comment after having grown up with a visible handicap?
Just make sure you don't talk down to Dad. He may have some deficencies but he's smart enough to know when he's being patronized. He told me he had put up with that for more years than he can count and won't take it at all from anyone anymore and suggests that doing that to Dad might set him off in a rage. I think that he has some very good advice and I'm passing it on to others.
Mawsy, when my Dad was in his 90's, I noticed people talking down to him...like he was a child. His mind was sharp and I didn't say anything to anyone because...I'm nice, but this really did bother me. I'm sure it would be the same way with a handicapped person.
Here is the Hard Choices website. You can buy a copy of the book, or read the pdf on-line.
http://www.hardchoices.com/toc_hc.html
As for not talking down to Dad, dementia is not cerebral palsy. There was nothing wrong with your son's brain. He had a physical disease. There is a great deal wrong with Dad's brain, and it is going to get a lot worse. Yes, I talk to my husband differently than I used to. I use a much more quiet voice. I don't fight with him over anything. I don't expect him to be able to think logically. I'm just plan not relating to him the way you relate to another adult.
Mawsy, your son is in denial. And it is going to hurt a great deal when what is actually going on hits. Does he realize that dementia is a fatal disease?
When there is dementia, you cannot talk to the person as you always have. They don't comprehend long sentences; directions; abstract ideas, to name just a few. But you can avoid baby talk and "talking down" to them. Communicating with an AD patient will be the focus of the workshops I hope to be giving in the fall.
Joan, oh, I agree about no baby talk. I, frankly, don't approve of talking to babies in baby talk. I've also got an objection to any of that high voiced stuff people use with little kids. But adult interaction. No. That's gone.
That kind of workshop is a great idea. I'm glad someone is working on that.
Oh, I'm sure he realizes AD is fatal. He just doesn't like that sing-songy stuff, baby talk, "Let's take our medicine, now, ok, Honey?" That's what drives him nuts.
I feel pretty bad for the kids. My son in Missouri tries to get out here twice a year. He said "Ya know, there's just a little bit of dad gone each time I see him."
Our daughter seems to be doing the best.
DH was playing cards with one grandson. DH made an incorrect play. Grandson said "You can't do that." DH asked why not. Grandson said "because it's wrong. That's not the way you taught me to play." DH said show me. GS did and the game continued. It was rather a touching scene. They both laughed and hugged each other and they played some more. GS is a lovely boy!
To answer the questions about my knee, I saw the orthopedist this afternoon. Without going into the gory details, he removed some fluid and injected the joint with steroids (anti-inflamatory, not athletic). It should be better in 3-4 days. My older daughter and her husband took me in and watched my wife while I was in with the doctor. Then the 4 of us went to a very nice restaurant near here for a relaxed dinner.
Mawzy, I do agree with your son. Of course we all know you can't have the same level of communication, but he is correct, that doesn’t mean one should be talked down to. I have seen it and though I like to think I am nice like dazed, sometimes I just can't hold my tongue. Another thing that troubles me immensely, is when people, ever doctors - talk to me about him, with him sitting right there!!! He isn't damn well invisible. He isn't deaf dumb and stupid. Show some compassion and some damn respect. WoW !! that got me riled!!
Marsh, I am relieved to here they were able to help with your knee. Lets hope it does heal up as well as the doctors think it will. How nice that you were all able to go out to dinner. Best wishes, Nikki
My kids are incredibly supportive. My DD is starting her own business as a web designer, and she sat her with DH and showed him her websites, and patiently showed him what she had done etc, even though she knew he didn't have the foggiest idea what she was saying. The attention, and the respect she showed him was wonderful and he was so uplifted by it. BTW he is my children's stepfather. We married when they were 9 and 12, they are now 41 and 44, so a lot of water has gone under the bridge, and they appreciate the fact that he's been a wonderful dad to them. Tomorrow we are going to Vermont with my son and DIL for a few days, just to be together. I couldn't do without thier support.
I'm right with all of you on the sing-song (what I called "high pitched") stuff. Drives me nuts even when it is used with kids, much less any adult.
I also totally agree about doctors who aren't aware that their patient is right there and talk over them. I'm not having that problem, but I am having a no time to talk to them without him problem. ...sigh...
Starling, I was having that trouble too last year with Lynn's old doctor at the VA. With the new doctor there I called ahead of time and said I needed to speak with the doctor alone, he made the time to talk to me! I wish I had done it sooner. Now I have him seeing my Neuro as well and he just loves Lynn to pieces! It has made a huge difference in both our lives. Keep asking and pushing. Some doctors are willing to do phone consults as well.
Nikki, you are right. This is part of the whole learning to ask for help thing that seems to be my major thing to learn right now. Good suggestions. Thanks.
Marsh, I'm SO glad you were able to get some relief for that knee. A nice evening out was a wonderful treat! Thank you for updating us!
My daughters and I took my husband to a baseball game last night. A first! He hadn't been to a game in three years. He did very well! Only feel asleep twice! <grin> Whenever we asked him if he was enjoying the game, he would say "yes!" and after we got home, we asked him if he had had a good time and he said "yes!" again. The girls were glad that we were all able to go and do something he used to enjoy so much. I realized while we were there that he couldn't even tell what team was at bat, what inning it was, or who was winning, but I think he loved just being with us away from the house!
Marsh, it's good to hear that your visit to the orthopedist went well (that was gory enough, thank you) and that you should be fine soon. Thanks for the update.
My husband gave up going to the major league games with my daughter in NYC several years ago. Hearing problems we thought then, but almost certainly dementia as well. I wonder if he would enjoy going to the new minor league team's games here. Much smaller stadium. I haven't seen it, but we did go to the one in Rochester, NY when we lived there. That was a team that was just under the major league team, so it was a larger than usual minor league stadium. I bet this one is smaller. Hum... I need to think about that.
With regard to "talking down", it's more than sing-songy or baby words. It's an attitude that the person is stupid, or inferior. It's an attitude of condescension.
One of the women who does the memory testing at the AD research center has this attitude. The first time my husband saw her, he complained to me afterwards. The next year, after maybe 45 minutes, he was so honked off that they had to stop the test, and it took several days of my talking with him, the tester, her boss, etc, to get him to agree to try again. They made it through the test, but he was not a happy camper, and his scores were much lower than I would have expected.
The third year, he was in total melt-down inside of fifteen minutes.
The tester insists the problem is the test -- it's too hard, patients get frustrated because they don't do well, they blame her for that, yadda yadda.
I had a heart-to-heart with her boss, who agreed to assign someone else to my husband from here on out. He went to take the test a week later. He was VERY resistant, stubborn, unhappy, all morning long while I tried to get him out of bed, dressed and fed, and to the appointment. He came out of the test laughing and chatting with the new tester.
Obviously, it's not the test...
I am changing the way I talk to my husband, sure. Making sure to be in front of him, with eye contact, making sure there aren't any distractions, using shorter sentences with simpler words, being careful not to offer him too many choices, things like that. That isn't condescension. He knows I am trying to communicate with him, and he reacts positively.
I think that's the point. The people who "talk down" are not trying to communicate. They don't even seem to understand that communication is possible.
They don't understand what they ARE communicating by their attitude.
Thank's Nikki, and others. I had the knee injected with steroids (anti-inflammatory, not athletic) on Thursday. It is now entirely pain-free and I am walking without trouble. I hope it lasts.
When I had right knee cleaned out, he injected the left one. Two years and no pain. And for heaven's sake, get some of that fish oil to keep the inflamation down!