I know that I have seen some comments like this on here. Please help me find them.
My husband was diagnosed in 1989 with picks, then AD and now frontal Lobe Dementia with Parkinson's like symptoms. We have been happily, or at least I thought so, for 48 years. He is very high functioning, always orientated, can carry on a conversation, just facts aren't accurate. Very egocentric.
He is in a nursing home very close to home. I kvisit him for short periods several times a day. He has decided to play true confessions now telling me about YEARS of ongoing relationships, strip clubs, women, 'etc. This illness has been going on for so long, that there was always something weird he was doing, and it did seem to be the illness. I did know that he was stealing vast amounts of money from our business. I tried to get him to tell me..suggesting that maybe he needed an allowance. I figured it was gambling as lack of inhibition is a main feature of his disease.
We have always had a loving, close, trusting and active intimate life until he turned away from me. I attributed to his meds. He is always so happy and cheerful with the staff, joking, ect. They are darling, honey and dear. Terms used for me a long time ago. I come in to see him and he glares at me, won't talk to me and it is miserable. The staff has told me that he is very depressed after my visits, but other wise happy and cooperative.
I can say that I am deeply hurt at this news, and honestly feel sorry for him that he felt he had to lead that kind of life. Seems like an addiction, almost. Believe me, I am not making excuses for him. He has pulled away from me physically in every way years ago, but I always hugged and kissed him, etc. I honor this man as my husband, my responsibility and do everything I can do to make him happy.
Everyone on these boards are so sweet and caring and say such nice things about their spouses. I will always care for him as I have always done. I will always be cheerful caring and friendly to him. I know it can be said that maybe he is making this up because of his illness, but I don't believe that. There are two many puzzle pieces that I can look back and put things to gather. I am not a suspicious person. But, those events that he keeps insisting on talking about describing as thrilling are in my mind 24/7. I do believe that it is his illness that set him up to talk about it. He isn't telling me that he did anything wrong or apologizing. Just events that he has had that he want to tell me now.
I change the subject and he gets madder at me for some reason. I have written him a long loving positive letter outlining how our marriage has worked, that we have both done things, were sorry for them and that we both worked hard to get close to each other again. While not focusing on those incidents,but putting our past and current relationship in a positive light. I had put some little handmade notes on his wall telling him how much I love and. Miss him! but he has taken them down and threw them away. They had been up for a while.
All this to tell all of you, he as a person disgusts me now, I will not touch him at this point. I wave him little kisses as I leave. I stay positive, I will make sure he is well cared for, but I would be happy if I never saw him again. And I think he has told that me about me for years, I just didn't act on it. My therapist says that I don't have to visit him and to stay away as it keeps me all churned up and sad. I feel like my life has been a lie..
I feel like the meanest person for not wanting to be with him. For not being good enough to casually overlook this. It really does make me mad that I do so much for him to make him happy, and now I am see in such a negative light by the staff. I only say these awful things here. I would never tell anyone at the nursing home any of this. We live in a retired community with a continum of care and everyone is related and news travels fast and it is hard to get your name off the bad list, once it lands there.
I am moving to a smaller apartment here in the compound and am giving our last few keepsakes to our grandchildren. I am having a grandmothers ring made to replace my wedding ring, the old one will go in a safe deposit box. I have strange allergies and will say it was giving me a rash. I don't want anything he has given me, any pics, or anything we shared into my new place. I won't throw them away, but they will be in the custody of my family much sooner than I thought. He is so disabled that he would never be able to visit my apt. Every time I see something, it reminds me of a time we shared that was a lie and the hurts start all over again. The grandchildren don't know and will treasure and keep what I give them.
pavane - my heart goes out to you. As for the stories he is telling, they could be true or not true. I don't know - only you can decide whether to believe them. And if he was doing all that, it could have been due to early symptoms of the disease. Whichever it is does not take away the pain and feelings of betrayal, broken trust, broken marriage promises.
Most of our marriage my husband always found fellow women employees to confide in. He still does it now with the single women RVers in the park and then they tell me. He joked around and was fun with others but not with me. People would say things like 'he must be so fun at home' - no he was not. Yes, we worked together on the house, yard and even when we had our own business. We enjoyed much of the same activities and sports so had that in common. He always kissed me when going to bed or leaving but that was mostly the extent of affection. After his affair he was affectionate and we were sexually active for a couple years then it died down again until ED made it impossible. Even though my husband's odd behavior was in mid 80s and he felt no guilty, I believe now the behavior was somehow connected to the AD that was to come. I asked his neurologist and she gave no answer, so even she is not sure and Alzheimer's is her specialty.
I am glad you have a counselor to talk with and are moving. Stay with and vent when need be.
Recently I had written about some of the issues you mentioned in your post. I have copied it and will try to paste it here:
"Jazzy,
LFL's and paulc's posts bring back memories, all of them challenging, to say the least. He, too, was by far the youngest in both the rehab and ALF. His age contributed to how difficult it was to find an ALF for him, although it was not the only factor.
He was angry in each facility. He did not lash out physically (or threaten violence), but verbally. Toward the staff and other patients he expressed confusion but he also spoke with sarcasm and impatience. He mostly remembered me by name and/or relationship. During my visits he would tell me when to leave and not exactly nicely.
He would also state, with determination, "when you leave I will go with you". It hit me while reading your topic that maybe he was telling me to go assuming I would take him. Or maybe he was telling me to leave as a way of projecting his anger. Maybe both; maybe neither.
My husband was a vegetarian for years for ethical reasons, although he ate meat probably until his late 20's. This had been noted on hospital records. Starting in rehab and continuing through ALF he ate in a dining room. He expressed interest in eating meat even though it had to be cut in small pieces. Initially there was hesitation in serving it to him, which made him angry, and as POA I was called. My thoughts were that he had so little pleasure and so little control that if he wanted to eat meat, so be it. I don't know if he was reverting back to his earlier life or seeking some control. paulc's comments made me think of this when I haven't in quite some time. I still feel self doubt about it.
I was advised, again starting in rehab and continuing in the ALF to bring things to him to remind him of his past; his identity. At rehab, rooms could not be modified, but I brought in photos of past trips that he had really enjoyed- photos that included him. This was not good. His anger increased.
Later, in ALF I continued to follow this by adding some favorite art pieces, as well as framed diplomas, certificates and such to his room. The director said this would be good for him and good for the staff- "to personalize him". I even added a photo of him with a famous person which got attention from the staff, yes, but I wonder if these things did anything positive for him.
Anyway, dear Jazzy, anger while our loved ones are in placement is a subject that still resonates with me. Now that I think of it, not only his anger, frustration and confusion, but mine too."
That was the end of my post, but I wanted to add that my husband also had FTD and during his last couple of months he started to exhibit parkinsonian traits as well. His hospice doc said he had the "Parkinson's glare". My husband also did some crazy things with money; in fact that was one of the most long standing issues between us.
Edited by me to add that the topic "Very Depressed", started by Jazzy also has other comments you may want to take a look at.
Pavane55 I am so sorry for the pain you are going through, so very unfair. My DH years before the dx would give me a look, like he wanted me to drop dead. Did not want to be around me or have anything to do with me. I now know it was the illness. But knowing that does not lessen the pain. And if you go back to my first posts, I was not so nice or caring. I was ready to divorce my DH, until I knew what was going on. It took a good year or so after the dx for me to not be mad at him.
Could you stay away for now till maybe this passes? Check on him by way of the nurses? Be kind to yourself.
I can't speak to any of the behaviors of your spouse but I know that YOU matter!! Take care of YOUR needs. No where does it say you need be a door mat. Folks here can offer help and there are always hugs. My best to you.
Pavane 55 this is very tough, I am very sorry. All the love and devotion and years and then to feel rejected. We KNOW it is the disease, but it is still hard. Every time I visit my guy, and he just sits with his eyes closed, I wonder if it even makes a difference I am there. I know it does though...especially when I groom him it seems to relax him.
Pavane, Your circumstances are painful to read and worse to endure. I was lucky in that my DH was as sweet as he could be all the way to the end. But I do know of cases where the personality has changed in which a person who once was a loving gentle person became aggressive.
Your husband has several DXs going on and it is a mystery how any one can present let alone so many. You know him better than anyone. Maybe you can think back to when the behaviour started and compare it to how he was "once upon a time" when things were as they should be. Perhaps that can give you a clue to the changes and which DX came first. If the doctors can't answer the question I don't know how it can be determined with certainty if he was ill when his mischief began or not.
That said, if he seems to be so annoyed when you visit, and because it pains you so, maybe rather than visiting " several times a day" cut the number of visits down and make them shorter in duration. You will not be abandoning him and you should not go shopping for sack cloth and ashes over this change in visitation habits. You need to remember that your health, and that is both physical as well as mental and emotional health, is just as important as his comfort and meeting his needs be it making sure the nursing staff is doing the things that need done, seeing if he needs new supplies etc. You are entitled to self preservation too.
I know that my husband would get a little grumpy if he felt I was "fussing" over him too much or felt I was " smothering" him with too much attention. Maybe just a little visitation adjustment would do you both some good.
I hope the advice of those who have had to face what you do and the suggestions of others will help..we all do care.
Thank you for all your kind words. Your validation means so much to me. It will help me stay on track in taking care of me, which ultimately means I can continue to care for him.
{"The staff has told me that he is very depressed after my visits, but other wise happy and cooperative."}
If visiting your hubby is causing him to be depressed then it is alright not to visit him and just call the nursing home to see how he is doing....once a day only. If him telling you his "tales" with other women....be it the disease that caused his behaviour or him being a dog....is upsetting you it's alright for you to pull away and tell him you don't want to hear that sort of talk and to stop it or you are leaving. If he continues then leave!
YOU have the right to set boundaries that protect you. YOU have the right to look after YOU. YOU have the right as the well spouse to move on and create YOUR new life. YOU have the right to not let other "people" judge you....tell them to pi** off. YOU have the right to not let what other people think of you dictate how you live your life.
{"All this to tell all of you, he as a person disgusts me now, I will not touch him at this point. I wave him little kisses as I leave. I stay positive, I will make sure he is well cared for, but I would be happy if I never saw him again. And I think he has told that me about me for years, I just didn't act on it. My therapist says that I don't have to visit him and to stay away as it keeps me all churned up and sad. I feel like my life has been a lie.."}
Listen to your therapist.
This disease just suck the life out of us but we can get it back....focus on the good things that happened in your marriage and let the bad stuff go, that's all we can do.
I also have been mentally going through my mind about his extensive history. Is he having cardiac issues, needs a psych consult, uti, I have been ill for over a week. The nursing home is in a small compound that houses lots of facilities we all use. So when I am over there, I mostly just pop in and say hi. I think he might be punishing me for being sick. We have a mail system here where I can write him a note and he gets it a few hours later, so I have tried not to neglect him. But even tho the NH doesn't see it, he is really acting like a petulant child. But thank you for your validation and words of encouragement
And dear sweet Coco. I was so ashamed to write such ugly things about my husband thinking of all of your posts. You are such an example of goodness and care for your husband. You are always so kind and compassionate in your comments. Thank you for being such an inspiration. God bless you and your loved one.
Amber. Thank you. I am going to make a list of your "suggestions" and put them where I will see them often to remind me that I have to be me first, true to me. I didn't cause this illness, have done everything possible to help him, BUT I don't have to get down and wallow(if that's word) in it with him. I am so glad that I didn't know him as a little boy, I don't think I would have liked him. Because his illness is so different and hard for others to understand, I do admit, I am concerned how others will perceive me and see me as being mean to him. Lordy, this is such an ugly disease and so misunderstood. Thank you for your care and concern.
Everyone here has offered such great words. I think we all have to "go inside" and figure out what is best for us after we have done all we can to ensure the best possible care for our spouse. After that, I think we have a responsibility not to become one of the common tragedies of the caregiver dying first. Much easier said than done and I have had huge struggles with all of this in the 2 plus years since my husband was admitted to a facility. Huge struggles and I have a long way to go. It is a roller coaster ride. Ugh!
I can so relate to your reactions. Up until recently, when something was not going well in my husband's world, could be a simple change like a new resident moving in, he becomes abusive to me. I live in a different town than he does and I have lost track of the number of times I have gone to visit him, and turned away as he was not speaking to me. I learned to avoid him when he was like that because if I tried to connect with him, he became increasingly verbally abusive and at one point came very close to hitting me. He has assaulted two men. This was a man who used to be gentle and kind to all.
Initially, he did not show those behaviours to any of the staff or other residents. As his bvFTD has progressed now when he is upset about something he gives his table mate the silent treatment. He is not acting that way towards me anymore.
As far as visiting I really struggle with societal expectations on what "a good spouse" "should" do. I get messages all the time from the staff and members of the community that I should be visiting my husband daily for varying lengths of time. I see him once a week and talk on the phone daily for about 10-15 minutes.
I write that with shaky fingers relying on the accepting nature of all here.
The physical essence of my husband is still present, but everything else about him is gone. It was brave of you to write, "he as a person disgusts me now." I am not there and can understand. I am just incredibly sad seeing all the losses almost each time I see him. We still hug but I am uncomfortable with kisses because I don't know this man anymore. Why we used to kiss passionately has been gone a very long time.
I wonder when the time comes when we become the priority after so many years of our loved one being just that, top priority.
{"As far as visiting I really struggle with societal expectations on what "a good spouse" "should" do. I get messages all the time from the staff and members of the community that I should be visiting my husband daily for varying lengths of time. I see him once a week and talk on the phone daily for about 10-15 minutes."}
What a "good" spouse should do is take good care of themselves and anyone that thinks they know what is "right" should have to live your/our lives for a while and then lets see how their tune changes. I've gone off on a few people and told them what they can do with their self righteous beliefs....and I didn't mince words either! A few "F" bombs were dropped. How dare they!
You do what feels right for you....I have no set days or length of times I visit him. I may only see him one time a week for a couple of hours or yesterday I took him out to a parade and rodeo and had him out for hours but it was what I felt "I" could deal with.
{" I wonder when the time comes when we become the priority after so many years of our loved one being just that, top priority."}
TODAY....RIGHT NOW!!!
I was going down hill with my health and other members will tell you the same about how taxing it is on you physical health, and now I've made ME the top priority. That doesn't mean you don't stop making sure he has good care but it's your turn.
I wish there was something I could offer here, but I have nothing........my spouse is certainly a different person than the one I married. I remember, walking down the aisle of the church & everything & everyone else was a blur, except him. He was the only thing I saw. It really hurts my heart now when I think of those things. I don't really care to be "close" to him in any manner, many times I find him to be rather disgusting, mostly when he refuses to take care of his personal hygiene or get a haircut (the last time, I just took him! No discussion, just do it!) I guess I try to avoid him when I can - how sad. He isn't abusive, but so argumentative, so self-centered (I know, I know, it's the disease, but it's still difficult to deal with). We have no common ground, no emotional connection. It's rather lonely. I like the phrase "the good spouse" - what others think we should be. Well, I'm not - I try day by day, & fall short constantly. Pavanne5, my comments certainly don't help you, but know that you're surely not alone. The negative & the nasty can be talked about here without judgment.
Mim- similar to you, he is just someone I have to take care of. I can't wait until I can place him or he dies so I can go on with life. It is hard to live and take care of someone that you don't want to connect with on any level.
Charlotte - we must have some things in common! Yes, I feel obligated & committed to taking care of him, & once in a great while there's a tiny spark of that old feeling, but it gets extinguished rather quickly. I couldn't just abandon him- 48 years together is a long time to just brush aside. BUT - there are many times I wonder what it would be like to just be responsible for myself, what I will do with the bedroom I plan on reclaiming some day, what it would be like to do just what I want to do, when I want to do it, with no explanations. Silly things in the overall scheme of things, I suppose, but I do look forward to (hopefully!) a couple of years of freedom for myself. We're not getting any younger - hope I even HAVE a couple of years! ;)
Charlotte - it's me again. Looked at your profile, see that you are on the other end of the country. I guess that rules out "doing lunch", doesn't it? :D
Because Kevan has no insight and with the bvFronto he is very difficult. He is so nice to others but treats me different. I try to ignore him when he is cruel , and I know that look that says drop dead, or get out of my life. Please take care of yourself. Maybe you should consider moving to a different place where no one knows him. It may be better for you.
Yes for now Mim. This is a small country in many ways. I hope I am still able and the RV is in shape to travel because I so want to hit the road again. My feet are 'itching' so bad to go again.
Mim and Charlotte. I am right there with you. I am really down. I am taking anxiety meds. But I just do not want to do anything. He wants to help or he has to go with me. I love how family thinks that an occasional day is enough for me. Sure he can walk and talk and feed himself. But he can not carry on or understand a conversation. He cannot fix his food. I was sick for a week and he just said I a so glad you are feeling better. I am NOT! I am now on medicine for ulcers. I have never taken anything but Advil. Now I am on 3 medicines. I am 52, I want to work, I want to take a vacation, I want to go to the store by myself.
Me too! Everything Mim said is so true to my situation. Our road in these circumstances seems so much harder and longer. My DH was diagnosed in '09 at age 69. The progression has moved ever so slowly but he is definitely not the wonderful man I married 47 years ago. What a horrid disease.
You can read under the thread for May 2014 to find out what my day was like yesterday. Today the toilet seems to be working fine but I had to rip the carpet up in part of the bedroom where the water had traveled along the wall and soaked the carpet. It stinks under it - the pad, the wood, etc. Once I get it dry and will try baking soda to see if the smell will go away. If not, the carpet gets ripped out. Last night I could smell it. This is more evidence that I will not be able to tolerate when/if he becomes incontinent. Maybe I should stuff my noise with vicks until I can smell something else other than crap!
The fact he has no memory of yesterday at all, is totally in the dark over why all the wet carpets and the bathroom still not put back together makes me want him gone even more.
Doctor today told me to put salt on the wood, padding and carpet if I can't use bleach. The salt will kill the bacteria if any linger. It is almost all dried and doesn't seem to be smelling. But I will salt it once it is dry