Hi How do I tell my heart and my mind that the man I have in my life now is not the man I had before?? DH is losing more memory, tell more stories that haven't happened, gets upset because he is not able to do those things he did. He is not able to stay with me now as he gets to upset when he he goes back to LTC and causes problems. Dr. Called today and we had a long talk and they are confident they are doing the best for him. They will call in the geriatric team as needed. I can no long talk things out that I need help with. It just can't be the same and I am having a problem letting go.
Jazzy. Acceptance is such a necessary part of this horrible situation. I am lucky. I have accepted the fact that my husband will never be the same person I was so in love with. I don't know how I was able to accept it but I did. It takes a lot of work but if you can try to find a way to it would help. It is so lonely not being able to share problems or even joy with your husband. It must be especially hard to know that he can't come home to visit. I hope that you can find a way to accept the reality of this horrible disease and try to move forward even in the smallest of ways. It is a heartbreaking existence especially during the holidays. I understand and I care and I am so sorry for your heartbreak.
Jazzy, I said in a post a while ago "my heart can't accept what my mind already knows" and that's the truth.
I am so sorry you are going through this loss. Kevan has actually been remarkable on this journey...so aware, deciding on living in assisted living, still being able to help you at home etc. I'm sure you know that's very unusual with a spouse who has any form of dementia, much less FTD. It is hard to accept the changes but as you know we all adapt in our own way.
As you have followed my journey, you know that the only answer is TIME. It takes a long, long, long time to come to that acceptance. Some spouses take less time; some take more, but eventually the progression of the disease makes it so obvious that our dementia afflicted spouses are no longer who they were, that we have no choice left but to accept it.
Jazzy, yes time is indeed the one thing that helps us come to acceptance. For me it took time and was a very gradual thing. Even now since he is placed I am still in the process of "letting go". I had to let go of his haircuts and let the facility do it even tho I do not like the way they cut his hair. After yesterday's visit out with the family I made the decision that I will no longer take him out for large family gatherings. He is not engaging with anyone and is constantly getting up to wander around in a strange environment. Yesterday he missed a step and had a nasty fall but thank goodness nothing was broken. It was the sign that I needed to say no more of this. Then I had to drive him back to the facility in bad weather and he was constantly talking and very difficult for me to concentrate on the road. I know in my head that I make the effort to take him out because it is something I want. He could care less. It is very hard to let go of what was. I am reminded of that part of the AA prayer--Lord help me to accept the things I cannot change, to change the things I can and the wisdom to know the difference. We cannot change this disease.
Thank you! I know he is changing and now even the little things are difficult for him. I solved the problem of his upset with one of the other residents constant use of foul language when his meals are not in front of him ASAP. I had Kevan go to his meals 20 min later. It is working. His Dr. Called yesterday and we had a long talk and he is giving me the made up problems and fun activities. He is living in the real world less and less. It's hard to filter out the fact from fantasy. I take him out instead of going there as inside of me is the knowledge that I will be spending so much time there later that I just want to be somewhere other then there until I have no choice. Our youngest son and his wife are coming today. He has bi polar and OCD so they are short visits. This is his Christmas visit as she is having a hip replacement on the 15th of December. Kevan is coming but only for a short visit while they are here.
It is a gradual process, Jazzy, and like Joan said, it just takes Time.We went from no more traveling to no more going out with friends--socialization became just with family…and then not even that. I just gradually started to accept that there were more and more deficits…more and more losses. I think getting my Masters degree online in the evenings (because there was no real relationship with DH…just caregiving--tedious and lonely) kept me sane for awhile. It is hard to accept that he really, really can't do the same things he and you did before, and that life really, really has to change. It's like when you are standing barefoot right on the edge of the beach, and the little waves are pulling the sand out from under your feet.
Jazzy, Having recently passed the three and half year mark since DH's LTC placement I will say that I felt just like you do for the first two years. I finally realized I was doing it for me since he was oblivious to taking him out to eat and bringing him home for holidays. Because of my guilt I was ruining nine immediate family members holidays. With no interaction from him, although they all tried, it really left them feeling sad. I finally accepted the reality of this disease. I cannot make him better. As others have said time will help. Hang in there Jazzy. We are with you and do understand. ((Hugs))
Oh Jazzy, I really feel for you. Such a hard time.
AliM mentioned it took two years and for me 2.5 years after placement. I still really miss him and struggle with all the ongoing losses and thankfully they don't hurt quite as much. Still hurts, just not quite as much. It has been a good while (thankfully) since I have dropped to my knees wailing. I am not anywhere near where I want to be but am starting, slowly, to build a new life. This disease is not for the faint of heart.
Hi Jazzy, I think that part of the problem is that when our spouses still look like their old selves, it's easy for us to play mind games on ourselves, pretending that they are not so bad. Although my husband is in LTC and does not even know where he is, he still looks like the man I knew and still walks without assistance. Unless you talk to him, you would not know that he was impaired.
He used to accompany me to the post office at the mall at end of each business day, so one of us could go in with the mail and the other one could wait outside in the car and not have to find a parking spot. After he stopped driving, I would be the one to wait in the car and he would go inside with the mail. Today I had to go to that post office and was wishing that he could run in for me so I could avoid looking for a parking place. Who am I kidding? It has been many years since he last went into the mall. In fact, one of the last times he did that, he took so long that I called him on his cell phone and asked, "Are you lost?" He replied, laughing, "No, but I'm not fully oriented, either." (He really was a very witty man, even as he declined.) Like you, I miss his help and advice and I also miss the laughter he brought into our lives.
The only way I can deal with any of this is to block out the sentimental memories and focus on the practical side of things. That probably is not a healthy thing to do emotionally but it allows me to maintain my composure and to keep putting one foot in front of the other. Hang in there -- we understand.
Thank you are all I have for support and I really look forward to reading your comments.
Yesterday I drove him back to the LTC. On the way I stopped to mail a parcel. The clerk was counting stamps and he exploded at her because he felt she should drop her counting to serve us. When we got to the residence I realixed he was crying. He hasn't cried in about two tears. He said he feels bad because he can't live with me and realizes he has to live here. He is also worried about me because he can't do the little jobs around the house that need to be done and I have to hire someone to do them but I don't have the money right now. He said he doesn't like this life we have to live now with what ever is wrong with him. He also said he now knows how lonesome I am and is really upset with our kids for not even calling to see if I am alright. I felt so bad I cried right with him. He put his arms around me and held me then went into his new home. He called me this morning to tell me that he was going back to bed. He slept for two hours. I haven't heard from him again today. He usually calls three times during the day but not today. I have contacted a church group of ladies today and will be joining them in January. Their meeting in Dec is their christmas pot luck and I don't know if I would be intruding. Your right this disease is definitely not for the faint of heart.
Jazzy, I hear you loud and clear. I just got back from Vermont and NY, and DD around the corner is not responding to my voice mails or offering supper, or anything like that. God forbid she do anything to help--it is all about what I can do for her. DH only actually broke down and cried once, not very long before he died. It was heartbreaking. He wanted to go back to NY (East Harlem circa 1935--1943) and be with his parents and brothers and sisters…felt that I was preventing him from doing that. I can't even find words to express how terrible I felt. I'm going to try the same thing you are doing--hook up with one or two church groups after the holidays. I, too, feel that joining the women's group or the choir just before Christmas is intruding. Maybe it isn't…but it's just the way I feel.
Jazzy and Elizabeth. Your stories break my heart. Jazzy your husband was so sensitive and aware of the sadness. You should join the Christmas potluck. You will not be intruding! Elizabeth. Its so difficult going through what you ate going through and not having support. I don't know what goes through people's minds. I thinking of you and jazzy. So unfair.
I called DH tonight just to chat. He wasn't interested in chatting. He was only interested in his problems if the day at his LTC. It is not something that I will find easy to live with these chages. One day he is crying and all concerned about me but now he doesn't want to come and visit now and he is just only interested in him again. The bvFTD is up front again. It's so strange how it runs and shifts. In and out of our lives like a thief in the night. This is terribly painful.