I have read some of the chat on this website, so I know many of you are in a similar situation. I married my husband 12 years ago, when I was 42 and he 51. He has 3 grown children. I have no children.
I was looking forward to spending my "golden" years with this bright, funny, handsome man. Two years ago he was diagnosed with a "semantic" dementia. It has progressed quite quickly. His 87 year old mother passed away last May and that seemed to send him into a rapid downward spiral. After the funeral, he became quite manic, would accuse me of all sorts of things, "trying to steal his money", "having affairs". It was awful. He became physically abusive, throwing a chair at me and telling me he was going to "kill" me.
I ended up calling the police and having him taken to the hospital, because I couldn't take it anymore. He was released from the hospital but only with 24 hour care. I found a beautiful private home for him to live in. He is on anti-psychotics that have mellowed him out.
NOw his entire attitude towards me has changed...he would like me to be with him every moment of every day. I think being with me, makes him feel like his life is more "normal", but I can't do this. I am so angry, because if he were well, there is no way he would want to spend all his time with me. He would be having a drink with his kids, off with some buddies. Now I'm his everything and I really get angry at him. I had him home for Saturday evening...yes Valentine's Day and then he went back on Sunday. I went over on Monday to see him, and he immediately started to get dressed so I could take him somewhere. I can't keep taking him places. When the weather is nice we go for walks, but when the weather is bad, we end up going for something to eat, or for a haircut. I make sure he has money in his wallet, but he refuses to take any of it out. When I told him I would just like to sit and watch a moving, he started swearing at me and in his garbled language telling me he couldn't believe I would do this.
As much as I tell myself it is the disease I am beginning to hate him and I certainly am angry at him a lot. Does anyone else have this feeling of being smothered by a totally dependent man, who if they were well, wouldn't care??
I need to know how to deal with this and how to try to stop being so mad.
So far, my husband's journey has been gentle, so I can't be much help other than sympathize and tell you how sorry I am that things have been so rough for you. But I bet you're going to get buried in responses... I'd better get out of the way!
Welcome to my website. I started this website precisely because of the issues you raised that only another spouse could possibly understand. The change in feelings and relationship status, the anger at how the disease has changed our loving spouses into strangers. There are hundreds of posts on this board on these subjects, and I have written countless blogs about my own hurt and anger.
Please be sure to log onto the home page of the website - www.thealzheimerspouse.com - and look on the left side for all of the resources and information. I would suggest starting with "Newly Diagnosed/New to the website" for lots of information. Then "Understanding the Dementia Experience", an excellent explanation of Alzheimer's Disease. Click on "previous blogs" and scroll through the topics. There are many to which you will relate, including, anger, lack of patience, loss of companionship, loss of conversation. Also, check throught the Articles of Interest Section, and because your husband falls into this category, click on EOAD (early onset Alzheimer's Disease).
You can also do a search at the top of this board for subjects of interest.
Everyone here is a spouse, so we fully understand each other's "unique issues". Everyone is helpful, supportive, informative, and on a different leg of the AD journey, so there is always someone who has been where you are and can help.
I hope you will visit often - check the home page daily for news updates and new blogs.
Beverley, hmmmm, I think we all get miffed at certain things but one thing I try to remember is that it's the disease and not my Dh. I like Sunshyne haven't had to deal with the monster AD as my Dh is pretty easy going. Sure there are things that get me crazed but I try to remember that if I hold in all the funky stuff it only makes it worse and only makes it harder on me, I have enough going on that I don't need to add to it by holding on to it. I guess I don't get angry, just frustrated more so, like when he puts things in a different place than where I put it to start with then I spend 30 minutes looking for it. Shadowing drives me crazy, but I am even getting use to it. But even frustration can drag you down. So I try not to dwell on it. Just let it go. I pray that we don't go thru the ugly stage, but if and when it comes I will try to react the same way I do now. I watched my MIL be angry the whole AD journey, and honestly it made her an very sad person so much so that most people don't even want to be around her. I don't want to be like that. So I am trying to release the bad energy and survive. Rk
Beverley, I am sorry for what you are going through but glad you found your way here. How often do you visit your husband? Can you cut back on the visits for your own health and sanity? Do his children visit and if so how often? I really don't have any earthshaking advice but perhaps someone will be along to help you more. Hang in there and with us and we will help as much as we can.
Although I'm not speaking from the experience of having my DH in a secure and good facility, there are days here when I feel like I'm suffocating, days when the smallest thing flips me into teeth gritting fury, and days when I am faced with the reality that if I DON't try to preserve something of myself, IT will get us both. I do understand the anger and the disappointment. I also understand the fear of living with someone who has the strength and carries enough rage to hurt you or threaten such things. It would take a saint to experience that and feel at peace about it. No matter if it IS a disease or normal meanness. There IS such a thing as normal meanness.. Won't go there but just wanted to encourage you this day to consider the possibilities that if he is in a good nice safe place, the staff there may be able to keep him involved in their activities and you give yourself a break..even a WEEK!!
Beverly, smothering - I can really realate to that. There was a time when my husband was calling me at work 10-15 times a day. The conversations were always short but it was very disruptive for me and irritating. Then we went through the velcro stage where he wanted to go everywhere with me even shopping - the man had always hated shopping. The anger you are feeling is normal given the circumstances. Start pulling yourself away a bit and give yourself a life - have lunch or dinner with friends, go to movies with friends, find an activity you can do on a regular basis that you enjoy. Does the place he is at have activities/outings that you can do with him or he can go with them on his own?
I ran into a problem with group things for my husband as he was never one to like to do things in a group so he was not a joiner for that type of thing. Nor had he ever really learned to play games like checkers, chess or many card games that also could have been used to help keep him busy.
Some of the best advice I was given was to give myself something each week to do that I could look forward to. It really does make a difference!
As of last week, I don't feel safe leaving DH alone at all--even for an hour or so. So, this week, I'm trying to figure out how I'm gong to retain as much sanity as possible.
I am a lay minister at our church--a long-term care ministry. I received this call 4 months before DH was diagnosed with MCI. Go figure. Now he has moderate/severe AD. I shared with the group last Sunday what's going on in our home. I know I'm being paranoid but I felt like a fool. I think that's pride or something--These are all beautiful, loving, caring people. I think they just didn't know what to say. They knew he had AD but didn't realize how it had progressed.
I think I need to think of something else. Agreed?? :)
Mawzy - yes you need to think of something else. You also need to figure out a way to have time to do some of the things that are so important to you. He would never have wanted the disease to eat you too along with him.
Mawzy, have you told the group what they can do to help you? Not only do people not know what to say, they don't know what they can do to help. I have offered to "preach" the sermon at our church's Men's Communion Breakfast (even though it means getting up at 6:00 AM, with no breakfast until 8:00). If they accept my offer I'm going to do a modified version of the talk I have given to Doctors and Rotary - tell them what we are going through and what they can do to help. It won't be hard to get the religious aspects into the talk.
Beverley, bless your sweet heart! I can certainly understand your feelings of anger. This is not what we second wives were promised, not what we looked forward to. I have the most awful thoughts since my DH's Alzheimer's Disease has gotten worse. He is still living at home and I am his sole caregiver. I never wanted to be his mother. Some days, everything I do makes him furious. He has shoved his dinner plate onto the floor when I served something he didn't want to eat. His outbursts are always sudden and loud, and out of the blue, and I "jump out of my skin". He gets over it, and my heart rate is still in the 150's. I tell you, and I tell myself, it is NOT him, it's that devil disease speaking through him. If only an Exorcist would pull it out of it... He is a genius at pushing all my guilt buttons, and I do feel so sorry for him. This is an unfair, mean, vicious disease. In Ann Davidson's "A Curious Kind of Widow" - she compares it to an evil vixen who has come between them - and eventually the vixen stole him away from her. We understand the feeling. I know you feel angry. I think I'm more disappointed than angry. Second marriages are different from young first marriages. We don't plan for children and the future. We plan for now and next week. We find ourselves locked into a relationship that is nothing like we planned and we are less flexible than we were in our 20's ...(in more ways than one).. I'm sorry for all of us. It helps to write on the Message Boards...I know, it's helped me and I'm a newbie. You are allowed to express your most innermost thoughts and you won't be criticized. You can let it all hang out....and we'll say 'I understand!'
Yes. Tell people what's going on and give them specifics on hpw they can help. Anything they do that actually helps is one less thing mon your plate. This will cut your stress and your frustation and anger. You shouldn't be doing it all yourself when there is help. Sometimes it's easier to do things yourself, because you don't know who might be able and available to help, and don't think there's time to be chasing down whoever it might be.
Marsh--the thread you helped me post, might help with your talk. There's a few specific ideas for helping in it.
OMG! I couldn't believe that book! I swear Ann Davidson was looking in my windows and simply wrote about what she saw in my house. I quote her words all the time. I bought six extra copies of the book and I give them to other 'curious kind of widows'. Don't you think that name alone hits the nail on the head. She said she wasn't divorced, but she was having to handle all the challenges of life alone, - without sharing or discussing it with him, and he was no longer sleeping beside her in their bed.... and she wasn't a widow, because he was still very much alive.
I believe moving him into a nursing home was a bit easier because he had a regular day care routine established. We have not found such a place so far. Just getting him there will be a very tall step to take.. He doesn't want to be around "people like that!"
I DID get many ideas from her book. Should be required reading.
Marsh--I wouldn't know what to ask for unless someone wants to come over here and stay with DH and someone else drive me to visit some of the sick and shut-ins. I realize I sound negative and I don't want to be that way. I need to rethink this stuff.
Do you have a copy of your presentation available? I'd love to read it. I'm sure I would be able to glean a lot of good suggestions if you have made it public.
Thank you to everyone who has made comments. I am going to get the book "Curious kind of Widow". It sounds like a fabulous read.
Just venting on this website and hearing your comment has made me feel better. I had another good/bad day yesterday. We went for a walk in beautiful sunshine and came back and watched a movie, then he wanted to take a rest. As soon as I said okay then you take a rest and I will go home and feed the cats, things became difficult. He started getting dressed to go with me. He keeps saying he doesn't know what to do. His life is very small, FTD is so mean, he can't/wont play checkers or cards or much of anything. Even watching TV/Movie is difficult, since he can't focus on things for very long and doesn't understand language very well.
I am in this alone, the two sons that live in our city don't want to deal with him, and the son that is compassionate lives about 8 hours away. I also have this feeling that few if any people actually care about me. His kids certainly don't and my family all live thousands of miles away, so all I can do is email. To top things off, my two best girlfriends moved away within the last few years. I still hav ethe close relationship with them, but talking on the phone or via email is not the same as having a glass of wine or a cup of coffee.
I'm starting to round up all my old friends (married or single). I haven't been great at keeping in touch over the last couple of years, since I was so caught up in my own traumas.
Thank you all again. I will keep reading and writing.
Mawzy, most of my talk is based on comments from this website, put into a logical order. I'd be glad to send you my notes if you send me your e-mail address. Mine is in my profile.
Also, there are good ideas in the article written by Carosi. I helped her put it on one of the topics here, but I can't remember which one. Is this caregivers dementia?
Also, going back to the topic title question--How do I stop being angry?
Haven't gotten rid of all of it--I am human after all. However, somehow when I realized it was a waste of time and energy (I'm short of that) it went away. There are times I'll react (oops) instead of respond but as time goes by, those instances are less common--practice is my guess.
The only one lately that catches me is when he mixes up our current dog with one of the old ones. Chantey is buried in the side yard, and when he says, "I brought Chantey in." I snap, "I hope not. Chantey's dead." Then he's upset and I'm mad at myself, for not engaging the brain first. It's happened more than once and it gets me every time. Other stuff, actually more serious I deal with, no sweat. Oh, well.
I don't know how to get rid of anger either. My husband is 59 and diagnosed with FTD just last August. I can't believe we have to go through this. No one on either side of our families has had any type of dementia. All lived a long time. I think what makes it worse is that dementia was my husband's GREATEST FEAR. Now he doesn't even realize that something is wrong with him but my kids and I know that this would have been his worse nightmare.
I really know how you feel, my husband when he was well enough, demonstrated that he was going to end up in a chair with his head hung off to one side. He knew long before I did that something was wrong. My husband is still scared, and so unhappy because his life is so small.
I am here and hear to chat with. My experience has been FTD and Alz are very different. I am two years down the road and I look back at the first year and wonder know why I was so crazy...he was actually quite well. Enjoy what you have today. I sincerely hope your husband doesn't change rapidly.
Thanks for the support. I think what makes it harder is that this was his worse nightmare and both of our kids know it. At least they are adults (daughter is 26, son is 22). But just the other day my daughter said to me, "you know dad always said if I don't know what's going on take me out and shoot me". How do you answer that? I say that with the FTD he doesn't really realize what is going on and he is actually happy. Even the doctors have all said that the disease is not hard on the person with it but on the people around them.
Deb, do you really believe that our FTD husbands are not aware of their situations? Sometimes I see such fear in my dh's face but then other times he seems happy and unaware.
My husband's mother had AD. He had no understanding or patience with her. When he was diagnosed with FTD his doctor's felt he had no awareness that anything was wrong. The disease has to be his worst nightmare-but I truly believe he never had a clue.
Cassie, with my husband, I do believe he is not aware of his situation. He will say he has memory problems because his brain is "shrinking". If I try to ask him if he understand any specifics about his disease, nothing. I have yet to see any fear or anxiety due to his condition. As long as he is in his own home and can do the things he wants (mostly), he is fine.
Beverly and deb..I am also an FTD spouse,,older than either of you, but the anxiety and uncertainty is still there. As far as knowing? G is starting to realize there truly is something wrong with him..morning confusion lately is driving him nuts..so far he is dealing with it , but I know there will be an explosion down the road. Nothing makes it better..how I hate it being 8:00 at night and I'm alone with my anxieties and cold sweats while he has gone to bed for another 12-14 hour night. Hello..this is our world now and it STINKS.
Thanks Deb and bluedaze I shall remain hopeful then that he is unaware. (Perhaps the fear that I see is just my own reflected back at me.) As this topic was about anger I had better leave now before I get into trouble for going off topic!
My DH has AD and is still very aware of his loss of cognitive abilities. I have been told by the neurologists, that some patients are more aware than others. It depends on how much that area of the brain is being affected.
My DH has AD. He knows he has dementia but can't remember what it is. He says he has no memory problems. But he takes his pills because I think he has memory problems and he wants me to be happy.
He is happy, affectionate and pleasant to be around. Can't remember anything from one minute to another. Very sad, but like I said, he is happy. He doesn't get involved in any decision making. He tells me to do what I think is best as long as I am happy.
My DH knows he has AZ but doesn't seem to care one way or the other. If he forgets something...which is often.....He always has an excuse. "I was going to do this first" or "I'll do it tomorrow". He has always left everything up to me even before AZ although he'd act like he was in charge!!!! Now he just doesn't bother about it. Once in a great while he'll bring up something and I dread it because he doesn't understand what I am trying to tell him. I swear I must be speaking Swahili or something.
At The moment my anger is directed at the people that could be of help to me but just call every day and see how our night went. My husband snaped on Jan.4 of this year. Took him to the hospital and 3 weeks later came out not walking feeding himself or doing anything. Drs were amazed at how many skills he lost. He is in a hospital bed in my great room and I have been sleeping on the sofa every night for about a month. Or should I say trying to sleep. My husb sleeps because he is on medication but the problem is he is constantly moving all night long, cover will not stay on or he wakes up for a little while and calls my name. My church family and friends have been wonderful. Phone calls, cards, and even visits with food brought in. Here is my problem, what I would give to sleep in my bed for one whole night.
Mrs. T, I don't have any suggestions on what to give him to make him sleep but you really need to sleep in your bed again. Does he try to get out of bed? You may have to keep the side rails up but with my Mom I had to do more than that. I had to physically restrain her to keep her in bed at night. I bought a child TV monitor so I could watch her from my bed. I used sweats for her to sleep in at night. Actually if they were ok at bedtime I just left those on and changed her in the morning after her bath. Would he qualify for Hospice? or Home Health Care. Hospice came 5 mornings a week and got her up, showered, changed and dressed for the day. I don't know if you would be able to get this in your area, but the Hospice aide also had several private patients she seen and gave them showers etc. and they paid her $10.00 an hour. I imagine some of the other Aides might want some side money.
We came home from the hospital with hospice. My husband walked into the hospital but couldn't walk out of the hospital. Walking is one of the skills that he lost while in the hosp. As we all know , once a skill is lost it cannot be relearned. He is in diapers and has no problems sleeping at night because he is on meds. Some days he does not realize that he cannot walk and tries to get up. I do not want to take a chance that he will try to get up in the middle of the night and fall. That is why I am sleeping on the sofa. What keeps me awake is he is constantly moving in his sleep or he will wake up for a little while and call my name. With all of the movement the cover stays off of him , so I get up and cover him up. Hospice is coming 5 days a week now but as of next week will cut down to 3. They have been a tremendous help. Thought about pulling a Lucy and Ethel and rolling the bed down the hall at night to my bedroom door and rolling it back to the great room in the morning but the bed is to wide to go thru my hall. I was able to get 3 1/2 hrs straight sleep yesterday and I felt like a million. What gets me is all of the broken sleep that comes after midnight. Sometimes I am up every hour to hour and a half. I get up around 5:00 and cannot go back to sleep until bedtime.
could you try some type of clips that keep the blankets secured at 4 corners, slightly above your husbands body so he could turn without getting tangled?
Mrs. T, welcome. I would like to offer a suggestion that I have been thinking of for myself for when this happens to me. There are several men in his Sunday School class who would come and sit up all night on the sofa while you are in your bedroom (I can lock mine) (and I have a phone in my room if needed for anything) in your own bed sleeping. Or , in the alternative, sleep during the day while hospice is there. You really need your sleep. I've gone three weeks without much and was like a zombie. I now get at least two good nights a week (with a couple of short wake-ups). You need your rest!
Mrs T, just ask the people who are calling to check on you if one them might spend the night just one nite. I know that many times I asked someone in a rough situation what I can do to help lighten their load and the always say"nothing I am managing" when I know that there is something, in your case a nites rest! Just let them know and they can get the ball running, Shoot, you could even go out to a motel for one night and get a real nite's rest!!!!!!!!!!!!
Mrs. T. One of the Hospice Nurses brought me a net adult vest that was used on her Mom in the hospital,because she kept trying to get out of the bed. It slipped on like a backward vest and zipped up the back. It had 2 very long cotton straps that I wrapped around the side rails and tied in a loose know or pinned, on both sides. If you have it secured well he should not be able to get out of bed. With that and the TV Monitor I could hear her without having to get up every few minutes to see what she was doing. I also, kept the furnace temperature the same night and day. Good Luck.
Also, simply keep him in warmer clothes - sweats, even coats, at night. Look, he's not going to be going out sledding again, right? Keep the temp up and him in clothes that will wash easily.
as far as him calling you, what will happen if you do not answer him? Remember with babies that they'd squawk a little and then go back to sleep? He may as well. But be sure you've got the outside doors secured.
Also, it's quite possible that he COULD walk again if the meds were reduced - do you want that? Mine was zonked on seroquel in the hospital but came home able to walk about as usual after he got that out of his system.
I can truly sympathize with your situation as mine is very similar. This is a second marriage for both of us, though we have been married for almost 29 years now. We both have children by first marriages, but none between us. It seems to sometimes create additional problems with the children of the afflicted spouse. I truly hope that the events in your life can come to a somewhat satisfying conclusion and that life becomes kinder to you. I honestly can understand your anger and do feel your pain. Take care of yourself.
Beverley, I feel your pain,..and understand the need to get one entire night of sleep, waking up whenever I wanted to...not having to. My husband has AD, is 81 and is entirely dependant. He wants me to sit next to him all the time...even if his eyes are closed and he is dozing. If I move, he asks, "where are you going'. I doubt he'd be happy if I asked anyone to come in and spell me for one night. I had a sitter come over for one hour yesterday so I could attend Thursday noon Eucharist Service. When she left, she said, "I might come back later!" He replied, "I'd rather you didn't." Thank God! she has a sense of humor and understood! I was so embarrassed.