Dignity is an issue, so is control. We had a huge problem a few weeks ago, when my son took the gas hose away from my DH at the gas station. It was a rainy day, and my son was in a hurry.DH was, and still is, furious with my son. He took away a task DH can still do(partially. We share. I do the credit card part, he does the gas cap, the fueling and replacing the hose and gas cap)DH checks the gas every time we enter the car. He gets out of the car first when we get home, to show me how far to pull the car into the garage before I hit the little step.He always remembers. My dignity however, is greatly reduced, by my DH's refusal to do other things, like take his meds on time and this morning he refused to go to the lab to get blood drawn.He wanted to eat breakfast.I went along with his decision. I walked out of the room, then reentered 10 minutes later. He was still in his robe. I said, "Just think of why you won't go today. We could go tomorrow or Monday instead." I then took my shower. he came in and said, "When you're done, I'll be ready."I have to always be thinking, and ready to reframe my requests, and change plans, no matter how I feel or what I would like to do.Phyllis9
An interesting issue re: dignity, when you have kids or teens still in the picture, is having to sort of train your young people to behave as if they are giving credence to Dad as a parent even when they've long since written him off as a parenting force.
One of the first things that I noticed when AD began was that my husband started thinking of himself first, and what he wanted to do and how he wanted to do it, which was NOT the way he had been - he was happy for the family to make the plans and him drive us and just enjoy everything. That stopped. I soon learned that flexibility was my new password. As long as it wasn't a doctor's appointment, I went with the flow....I tried not to get mad, because it would get him mad. And, while they are forgetful, they do seem to be able to hold a grudge for a while in the earlier stages - like your son, Phyllis...we have to let them do what they CAN do, for their dignity's sake if possible. Sometimes it isn't possible, but we have to try.
Try telling teens to treat the AD patient like the were their best friends or a girl they are trying to impress. Always try to smile, never raise you voice, and never get physical. Redirect is the name of the game. Learn to distract them to get them to "let go" or replace that object with something they would want.
This is all a learning experience for us all. We have to share what works for us, so others can see if it will work for them.
Our daughter was 10 when DH had his Mental Breakdown. Over the years of her growing up there were times when I had to be a buffer between them. On one hand facing DH down on his arbitrary, controlling behavior when he too it to excess, and on the other working with her on ways to defuse things and direct them differently the next time. From the get-go he had a habit of trying to handoff a lot of chores to her and/or get her to be his personal gofer. I told and reinforced to her that she had the right to refuse, particularly when she was already busy; it interfered with schoolwork;if she knew he was able o do it himself;even if she just didn''t wnt to. The only restriction on her refusal was: She had to be respectful. No sassing; bad language; sarcasm, etc. Though we on;ly saw her for a week last June, on a visit, she handled everything the same. I have great respect for the way she does it. She's better than I at telling him: he can do it himself; she's busy; etc. In fact, she asked me why I folded so often and didn't make him do somethings himself. I told her that wioth doing this all day, sometimes it was just easier to do what he wantd than to do anything else.
Dignity is so important. In my husband's facility very often when residents start to act out the aids refer to them as Mr J or Mrs O and it seems to get their attention. Mary is right-we oldies are here for the newbies to help you on your way.
Thanks carosi,I think I do too much and I worry too much about what the right thing to do is, and where my self respect gets stuck is when I get yelled at by my DH no matter which choice I make.I made meatballs and spaghetti for supper this week, and I invited him to do the taste testing before we ate. He is often critical of my cooking, as he used to be the cook in our house, and he still has good taste buds.He took one taste and threw the whole potful of hot food directly into the garbage can! This tastes nasty, he said. So now, do I stop asking him to taste the supper and just serve it?Phyllis9
First, to Joan,,,Thanks,,, I have thought a lot about dignity and how to make DH feel important... What a fine line we're on, all of us... There are those chores that they are clearly capable of doing and those chores that are a royal mess when they even attempt... But in his mind, rolling the garbage out to the curb is too much for him... On the other hand , a door just needed a little twist of the stop that goes in the hinge pin and he takes the entire door off, goes into a rage and I end up, 100 lb wonder, rehanging that door myself as he walks off having done his duty.... The mind, a funny thing....And yes, we are guilty at doing things that we know we'll have to do over anyway.... Logic and reasoning , all gone..So sad, this from a man who graduated CumLaude with two degrees and now I watch him try to extract bits and pieces of what is said and try to understand it...We explain, over and over and we get that blank look... So, I suppose what I'm heading to is, try as we might, sometimes, the effort is all we can expect... I honestly think DH is somewhat relieved that I handle everything... Not sure because, he can't express himself without first, pointing out how awful I handle things... OK, All can chuckle,,, in a way, only those of us, here, know....Thanks, all, You are a great support for me and I love you all for that....peggy
As I mentioned in the blog, I wrote it because I was preparing for Tracy Mobley's guest blog on Monday giving her perspective on being the one living with dementia. I was reading her book - Young Hope/Broken Road (http://astore.amazon.com/wwwthealzheim-20/detail/1432705954), and it made me think about things from the perspective of the person who has the dementia. If you have not read the blog, please do so, and be sure to look for Tracy's blog on Monday. Tracy reminds me so much of my husband - fighting so hard to hang on to freedom, choices, and dignity.
Joan, I did the "do you want A or do you want B" as long as I could. Now I don't do that anymore because he rarely can make an A vs. B decision. I came here asking what to do about the A vs. B decisions when he first stopped being able to make even that little choice. I do sometimes still ask a single yes/no question. Some of the time he can still manage that.
He has made his own breakfast for most of our marriage. Now I put out most of the stuff for him, and he can continue making breakfast for a little longer. It is literally the last thing he can still do for himself. But it is not going to last. It is getting harder and harder to convince him that it is time to get up off the couch and start fixing breakfast.
I no longer ask him to taste anything. I no longer ask what he wants for supper. I tell him.
There comes a point where the caregiver has to accept that the LO is not going to be making decisions of any kind anymore.
That's what I do also, Starling. I direct him to the freezer for his english muffin, get out the butter and set it by the toaster with his pills, then point him in the direction of the microwave when he's looking around blankly. If I don't keep tabs, the next day I'll find a stale muffin in the microwave, a forgotten one in the toaster, and the butter in the freezer. Sometimes he makes coffee, but I have to pay attention to make sure the filter basket is in, the lid is down, and the carafe is seated. Otherwise we get an overflow flood.
Later, I say "here's what we're doing today..." and tell him. When it's lunch time I say "let's eat at Noodles, ok?" It's always ok. "It's time to take Gabe to carpool...it's time to pick Gabe up!" I just tell him, and off we go. Most of the rest of the time he sits in a chair.
I also try to let DH do whatever he can. I'd rather do it myself, but... I let him,then I clean it up if necessary when he isn't around. He always asks me what he can do to help me, so I usually can find something he can do. He will vacumn everyday if I ask; he always sets the table, clears the table, loads dishwasher and unloads. I always praise him for hanging up his clothes - which he has always done. Except he hangs the dirty ones up too! So I just go through the closet afterwards and remove them. I've stopped asking him what he wants to eat since he will eat almost anything I make. Wasn't that way for awhile - but is now. He does get aggravated at me if he's doing something and I try to correct him if he's doing it wrong. So..I try not to do that. I do want him to keep doing things he can do as long as possible.
DH is sleeping a lot later in the morning, sometimes doesn't get up until almost noon, so his morning pills aren't taken until afternoon, and only after a lot of prodding, which gets him very, very annoyed. But, if I don't prod him, they will stay on the plate for hours! There is no schedule anymore. He eats when he wants. The other night he didn't have dinner with me, said he wasn't hungry. I placed all the food on the plate and got it ready for the microwave so he could eat when he wanted. He put the plate in the microwave and I went up to bed. Late the next morning I noticed something in the microwave. It was his plate from the night before. He had forgotten it was in there and went up to bed! I don't really know what to do. He doesn't seem to be hungry at mealtime. And he doesn't want to be told what to do and when to do it. So, what do I do? Let him eat his snacks and not get the right nourishment? I'm worried about his health.
The other day I went grocery shopping and when I came home he told me not to empty the car, he would do it. He decided to start shoveling the driveway at that time (only a little bit of snow) so I started bringing in the groceries. He yelled at me to stop. The whole neighborhood probably heard him. When I told him to stop hollering, and continued bringing in the groceries, he bolted into the house, slammed the door, and I didn't see him until evening. He was extremely angry. I guess I didn't consider his "dignity." It was his job to bring in the groceries...
Hi Bev,Are you up late tonight as I am? Your situation sounds so much like mine today.The schedule that was working for a while is all messed up. He woke up before me this morning. We had to go to the lab to get his quarterly blood drawn.He ate breakfast,(he was supposed to be fasting,oh well) but didn't take the sinemet that is supposed to be taken on an empty stomach.Then he didn't want to go to the lab.We finally did go at 9.He had been up since 7.So he didn't take the AM meds until we got back.Then he made a bologna sandwich at 11, so he couldn't take the 2nd sinemet until 1.He made himself an omelet at 4, so he wasn't hungry for supper.He napped from 11:30 to 12:30, then again from 4:30 until 7.Then he had dessert and tea and went back to bed.At least he didn't yell at me today, except this morning that he didn't want to go to the lab, doesn't want to take any more meds, the doctors are using him to experiment on.2 hours later, all was forgotten.I keep repeating my mantra, I didn't cause this, I can't fix it.I can only do what I can do. The rest is in God's hands.Phyllis9
I am really looking forward to this new guest column, Joan. Readers should know, however, that there IS a book they can read to discover perspectives of PWD told in first person narrative along with on point commentary by the author. Lisa Snyder's book, "Speaking Our Minds: Personal Reflections from People with Alzheimer's," provides profiles of 7 PWD. Along with "Still Alice," this book provides insights that are truly valuable for spouses like me or any AD caregivers. Snyder is a social worker with an Alzheimer Disease research Center in California.
I read both of those books - I found Lisa Snyder's okay, but not as insightful as I expected. In looking for the link to it, I noticed that there is a revised edition. I read the older version. The irony is that Still Alice was NOT written by someone with Alzheimer's Disease. The author is a professor who researched Alzheimer's Disease, and it is the best description from the perspective of someone with the disease that I have ever read. Tracy Mobley's book is not professionally written or edited - it is her feelings and thoughts on having the disease - raw and emotional. I definitely recommend it.
If anyone is interested in purchasing those books, the links are below:
Peggy, there are many of us on the board whose spouses were college professors with advanced degrees, or high powered executives. DOesn't matter - except that if they stay verbal they tend to speak in the same way they always did. It sounds so funny to hear my husband in one breath say, would you like me to consider removing my whitie (Depends) over here? and in the next breath start making the sound effects of an anti-aircraft gun for ten minutes unless interrupted!
Phyllis9: Yes, I was up late last night. I generally am. I'm a late night person, I guess. Right now my DH finally came down to eat something. I found him in the cabinet getting a stack of crackers and a banana. He has had nothing else to eat today. I suggested I make a sandwich for him or some cereal. He said, "I'll get it myself." He's angry with me today and I don't know why, asked him why he was angry and he said he wasn't. Oh well, guess it's going to be one of those days.....
Briegull: My husband was a professor in a university as well. He is ABD (all but dissertation) for a PhD. A very intelligent man. So sad to see what's happening to him.
I still use the technique of asking "would you like to do this or do that - two choices -. This is exactly what I did with my two children when they were very small and starting to spread their wings. (Would you like green beans or peas with your dinner, etc) It worked with them and it works with my DH. He is also usually anxious to please me so I often ask "Would you like to take a walk, eat lunch, etc. He always says yes - I hope this gives him a sense of autonomy. He is making choices; sort of. :-)