Hi! I was lucky enough to come across this site from a comment on the Alzteam site, and am so glad I did! There are always so many questions and sometimes the folks that are caring for their parents or another loved one, just don't 'get it'.
Anyway, I care for my 76 year old husband who has had dementia for about five and 1/2 years. His disease is progressing more rapidly these days, as I see changes sometimes daily. He does nothing but sit in front of the television and watches whatever 'the chosen' movie of the month happens to be. He will pick a movie and watch it over and over and over again (we are talking 3 to 5 times daily). That movie will go on for about six weeks, then he decides he doesn't like it anymore and chooses another. Then it starts all over again! There must be 1/2 dozen movies that I could act out in a moments notice! lol
We have been married for almost 27 years. I am 59 and have health issues of my own, one of them being on the list for my third kidney transplant. Currently, I have put myself on hold because I have no one to care for my husband (or my dogs) should I 'get the call'. We have seven children between us. His four don't have anything to do with us and two of mine live out of town. My oldest son helps when he can, but having two jobs doesn't give him much spare time. I am so sick of hearing (mostly from family members) "I don't know how you do it! I never could!"
Having said all this, I am hoping that by joining this site I can find answers to at least some of many questions! I thank you all, in advance, for your support in helping to get through these sometimes dark days!
Hi Peggy, welcome to the site. Not as many people as there once were but we support each other as we can. People with stars by their name have gone through this as I have where my wife passed away two years ago. Welcome.
Yes, Wolf has chosen not to be a 'star' like the rest who earned them! :-)
Hi and welcome. It was probably my post there and I am glad you have joined us. There is a lot of information here and there are many of us still going through it that don't post often. Thankfully many who have gone before us have stayed around to support us through this.
We watch the same programs all the time - mostly the old ones and westerns. I don't mind them but I would go crazy without my internet - games to play, music to listen to or other shows to watch.
I am 64, my husband 69. We are entering year 10 since diagnosis. We just passed our 46th anniversary. I say passed because it meant nothing to him. When I mentioned it his reply was 'oh'.
Have you contacted Aging and Long Term Care? They can get you set up with help that may be needed. As for your health, you need to make sure this disease does not take two of you. Our spouse is dying, but we don't need to go with them. I would seriously look into respite if not placement when a kidney becomes available. If he is a veteran, have you checked to see what they have available if you qualify.
Hi Peggy, and welcome to the club nobody wants to join. My husband was 25 years older than I, and we went through the whole long, downward spiral of a slowly-progressing dementia. Basically the world turned upside down as we made major life changes to get him taken care of--although an out-of-state move was necessary, I was able to keep him at home where he died with my arms around him on Sept. 2, 2014. I try to stay on these forums and post if I think I can be of any help to anybody. (Or sometimes just blab...ha,ha.)
A couple thoughts...don't forget that you're not going to be able to take care of him if you don't take care of yourself. Waiting for a kidney transplant is a huge deal. My suggestion is not to put it on hold, but set up some prior arrangements for respite care for him to go to, and a boarding place for the dogs--so if and when a kidney becomes available, you can take advantage of it. It may be that you need to have him on the list for more than one respite place, in case one doesn't have a bed when you need it, the other one might. Additionally, I would have some kind of live-in aide care plan lined up. It may be easier to have a live-in come in for him than to send him to respite. And perhaps if it is a private aide, they could care for the dogs at home, too. Or you could cobble together some arrangement combining your son and an aide. Under the circumstances, any employer would understand why he might need to take some time off work. Anyway, these are just some ideas off the top of my head. Others will probably chime in.
Hi Peggy... Welcome (I wish there was another word to use!). It's been 7 years since my husband's diagnosis, but we realize that things were going on long before that. He's in a facility now, for a year. He's been diagnosed with bladder cancer, so the tough decision not to seek treatment has been made...a rather sad, difficult to do. I have also had ovarian cancer this past year, had surgery, chemo, the whole bit. That's the main reason Dan was placed, but had that not happened in that way, he would have to be placed by now anyway. He is 82 & I am 75. Just a little background. As Wolf said, there isn't much activity on here anymore. I'm kind of sporadic with it myself I have to admit, but the site is a great resource. Much support here & posts from the past are a big help in facing whatever comes & to know you are not alone.
Hello, Peggy. So sorry you have to go through what so many of us have had to go through. I went through more than 10 years of dealing with dementia. When I look back, I wonder how I did it, but we all manage somehow to do it. The help here, for me, was immeasurable. I learned so much about how to deal with the tough situations some of us have had to go through. Some of us had, or have, cooperative and easy to handle spouses but others have not. We don't know what each day will bring, each is different. My husband was very angry a good deal of the time.
The other thing you run across is that nobody realizes being the spouse of an Alzheimers client is entirely different from being an adult son or daughter, or some other relationship. This is the only place I've found where the people do understand that, and "get" the issues. I would really recommend that you go back through some of the discussion topics, and also take a look at Joan's blogs over the years--they were very helpful.
Just thinking off the top of my head, you want to make sure you've got your finances set up so that you control everything, and make sure that his advance directives are in place, giving you a durable power of attorney to make all the decisions. The laws vary state-to-state, and of course we have people on here from Canada and as far away as Australia. So perhaps you need to talk with an estate planning attorney--the kind who understands eldercare and Medicaid (if you're in the States), and make sure your ducks are in a row. Even talking with whatever outreach your local Office for the Aging can provide might get you pointed in the right direction.
And make sure your husband has a definitive diagnosis from a neurologist, even if you plan to follow with the primary care physician for the day-to-day. There are different types of dementias, and knowing which on you're dealing with is important in planning care and anticipating the future.
Sorry if I sound bossy--just trying to think of some of the issues that need to be addressed to make things as easy on you as possible--because it's a real bear to deal with! I've been in health care since I was 19 years old--been a registered nurse from 1971 --til present...done hospital and home care both--and I truly believe that to be an Alzheimer spouse is one of the most difficult things out there.
Hi Peggy, Welcome to our group. You will find lots of support and understanding here as I did as I was going through my hell on earth as I call it. I would concur with all the sound advice that was given here. Most importantly you must take care of yourself because otherwise you will not be able to care for him or another way to put it is take your oxygen first as they say so you can help someone else. It took me a while to understand that concept but once I did I was better able to make decisions not so much based on what was best for him but what was best for me. I had family but my sons all had young families and so I rarely asked (which was probably my fault) but yes you need to hire a caregiver to come in. I had one come once a week in the beginning and she would take him out for 3 hours which helped immensely as I was trying to continue to work from home. Also you might look into your local senior citizen center. For about 18 months I would take him over there for lunch and socializing and them pick him up. It was a break for both of us for a couple hours a day. As the disease progressed, however, one day they called me and he had wondered into the women's restroom and did not know where he was, so I knew it was time to move on. I also was involved for 3 years in the local Alz Association and they offered a monthly support group. It served me well and I made many friends there and learned a lot as well about the disease. There are resources out there but you will have to take the steps to investigate and use them. Know that you are not alone. God bless.
Hi Peggy, and welcome. I'm sure the TV habit must drive you crazy. I used to use TV as a management tool, too, but unless I sat down with him in front of it, my husband would not stay. He would wander off and get into trouble. I must say I got to know a lot of shows I never would have watched otherwise. I was 59 when my husband was diagnosed and he was 19 years older than I was. It seems like another lifetime. He died this March. One thing that saved me from going crazy was that I hired an aide to come in for 3 hours twice a week to keep him company. They would do errands together. Later, I got some additional aides through the VA and they took him out to different places, sometimes stores, sometimes museums or horse shows. He also went to day care, which allowed me to work on the days he was there. I had to find all these resources on my own. I don't know how I did it. I really sympathize with your having to put your surgery on hold. Many of us put our needs second but those needs are nowhere near as serious as yours. I hope you can figure out how to get the care you need.
Hi Peggy, I am 63 caring for 74 year old husband who is in perfect health except for dementia - probably of the Alzheimer's type. Following much the same course as his mother did. We didn't have a good experience with the neurologist and haven't gone to another one. The treatment (actually non-treatment) is the same for all of the possible dementias he might have. He is on Aricept. Tried Namenda twice but he couldn't tolerate it. We are between 5 and 7 years into this hellish process with no end in sight.
My DH ("dear" husband) pretty much only watches tv. If I can't find anything I put on NCIS dvds. We are on the third trip through 12 seasons of that.
Thankfully I can still leave him alone for short periods of time so haven't hired help yet. We been married for 35 years. No kids. He has two sons from previous marriage, but he stopped talking to them years ago. Why do.so many men do that? We cared for them every summer and supported them and their mother for decades. Then when they are adults and could be fun, he decides to have nothing to do with them! Bugger
Anyway, Peggy, this is a wonderful place to find real, truthful, ideas how to handle caring for yourself and your.spouse.
bhv, sorry to hear of your story. Your husbands distance from his sons could stem from early stages of dementia, back when you didn't notice any symptoms. In Alz behavioral problems often show up before memory issues.
bhv, could it have been something the kids said or did that hurt or angered him? Dan has never had a good relationship with his first two, a daughter & son. As they became adults, they didn't try very hard to be in touch with him & he, trying to avoid confrontation I suppose, didn't pursue it. It was six of one, half a dozen of the other!
Paulc - it was 20 years ago before alz. That's what led us to get all the legal.documents in order. Good thing too. At that time we didn't dream of alz striking him. I thought it followed the females in his family. Turns out that was incorrect. Mim I think it was just complete lack of effort on their part. I used to joke that we could have a more rewarding relationship with a pet rock. The lawyer asked why he had.such a bad.relationship with his kids. That was a novel idea. It is not a BAD relationship. It takes two parties to have a relationship. Paulc - one son sent a father's day.card - the very first card ever- saying he wanted to get back in touch. DH kept trying to write a letter to tell him he just wanted him to know that he always did what he thought was best.for the boys. At that point his hands were shaking and he couldn't write a neat letter and he wouldn't let me type it for him. It was heart breaking. I took.a risk and emailed the young man a couple of times trying to get him to say something of value to his father. He wrote a nice response and sent a Christmas card that.year. By that time DH didn't recognize his name or remember he had a son. I tried to show him his son's facebook page but he got into a rage and said never to mention them again. Haven't heard from him since that Christmas card. Sometimes I think I should tell them about the alz, but don't know how to handle.that. I mean if he got absolutely no rsponse when he boxed up their pictures and sent them to them with a letter saying he never wanted to hear from them again... why would they respond now?
bhv, they was very nice how you tried to reconcile your husband with his kids. I am sorry it didn't work out.
At this point is more more about your relationship with his children and their knowledge of what is going on. You could let them know, say you don't understand why their father has acted this way in the past, and the Alzheimer's probably makes this impossible to fix. And to thank the son who made the effort for making an effort. And offer to keep them up to date if they wish to know. Just a suggestion, I don't know if this is the best approach.
My father had broken ties with his brother. When my father was in his 80s he received a letter from his sister-in-law that his brother was dying of cancer and would like to hear from him and could not understand why my father broke contact with him. My father's reaction was to destroy the letter, preventing me or my brother from contacting our uncle (we had no idea where our uncle lived). My brother told me this story. I now know that my father had dementia at this time (I did not realize it then) but his animosity towards his brother goes back a long time, perhaps rooted in jealousy. But my father's break with his brother, which happened a long time beforehand, is a mystery. And I suspect the same with your husband and his sons.
Very good advice from paulc about how bhv might contact her husband's children. It is wisdom we all can use.
I hear your sadness, paulc, about the fracture between your father and his brother and the extenuating circumstances prevented anyone from mending it. Every family has some relationship mess involving miscommunication, hurt feelings, and stubbornness about apologizing. It is good to remember that we were all young and impulsive and may have said and done hurtful things not because we were malicious, but because we were young, inexperienced, and impulsive. Throw in language which can be a time bomb of misunderstanding and the relations of a family lie in ashes. And sometimes no one can even remember the original igniting incident. So sad, but so true.
Bhv for what it is worth I would tell the kids about their fathers alz. I always find immediacy, dealing with it head on the best way to go. Then it is up to them not knowing only causes more issues. This whole thread brings up memories and questions for me.
When we got together I was a single parent with two boys 10 and 12. Lisa mid thirties with no kids and we never had any together. It was a very difficult time. We had a good relationship however there were behaviours, usually directed towards the boys, that I just could not understand totally out of character this caused a lot of problems between her and the boys and I always felt caught between the two. Although our relationship was basically good this put a major strain on it. As a result the boys and Lisa were never close and it certain'y affected my relationship with her and with the boys. All is well now their relationship got better through time and now they are very supportive of what we are dealing with. After reading about how Alzheimer behaviours can appear long before other signs are there I have wondered if this was actually a result of the desease. I have talked to the boys about this. In some weird way it makes me feel better about those times thinking that her behaviour was something really out of her control. There were a number of times where I felt I had to make a choice between her and the boys and I just a out walked out but I never did. Haven't admitted this before.
Thanks for the comments about the boys. I've been writing a letter in my head for a.long time. I think it is time to put it on paper. Rona - Of course I have nonidea about Lisa. I told my DH before we got married that I would not be having any children. Non-negotiable. He.said he.was.fine with that since he had two sons. I should have stopped right there. But he had a good relationship with the ex and they raised the boys together. I made it clear to both that I was not interested in being anyone's mother. Perhaps my DH should have stopped right there. I imagine it might have been confusing for the boys when they came for the summer. DH and our ex-wife had different parenting styles.than I grew.up with. I didn't want to impose different rules for the summer so tried to stay out of it. I provided for their needs. Tried to keep them entertained. Paid their babysitters. Did their laundry. Toilet trained the youngest three years in a row (she kept sending the poor boy in diapers; no idea why) bandaged their hurts, played life guard for the whole neighborhood of boys in our pool. But I was NOT ANYONE's Mother. They called me by my name, not Mommy. I told them they had one mother. They seemed to understand that.
Sorry I seem to have commandeered Peggy's thread into a completely different discussion. Sorry Peggy. Maybe that's why she hasn't responded here. If we need to discuss step kids any more I will.start a new thread.
No bhv I am good your comments just reminded me about our situation. I now feel the lady I loved was there and those strange behaviours were probably the beginning of Alzheimer's. Back to Peggy sorry if we headed off in a different direction.