I just found this website because of help from my grandson. My husband was diagnosed about 4 years ago with AD and I have gone through all of the stages of anger, resentment, depression and now loneliness. Besides the AD he fell in the hospital at 2 am one morning and received a head injury which required brain surgery. To make a long story short he came home after 5 weeks in hospital and after about a month his memory became even worse - like a landslide. The agitation, anger and agression took off to a level beyond my comprehension and I became so afraid of him. Again, long story short on June 9, with the help of his daughter, son and nephew, my husband was placed in a memory care facility and it has been an emotional roller coaster. The sadness of it all is that sometimes he has moments of clarity and just wants to go home and I too wish for that but I am afraid if I do bring him back home I will be the one getting hurt. The greatest fear that I have is him breaking one of my bones for I have severe osteoporosis and he is still a very strong man.
The loneliness is sometimes so unbearable and so painful and all I can do is cry, cry, cry. My children try to keep me involved and I have started going to the movies with them and just visiting with each of them but I still have to come home to the empty house. My family has been put on hold for the last several years because of caring for my husband (AD, triple by-pass, then the head injury) and I have resented it terribly.
I also feel such guilt knowing that he wants to come home but I want the man I married to come home, not the angry, agressive man he is now. I really thought that I could always care for and still work. My job is so important to me and I will need it even more if he should pass away. All of this has just heaped major guilt on me and I struggle with it daily.
This is my first time to "blog" but the need has never been so great.
Gay-get over the guilt. This monster of a disease has ruined all of our lives. Sure we resent it. Not what we worked all our lives for. Welcome to our group. bluedaze
Gay, you are among friends and will find help and solice here, even though none of us can change the reality of your situation. It is the best situation that your husband is placed, especially if his disease could harm you. You are blessed to have family to be with you and help you through this. Love to you.
Gay Please try to erase the word guilt from your mind. You are powerless over this disease ... it was going to take your husband no matter what you did . It sounds like you have given loving care to him for years As you yourself said, you put other family things on hold. Now is the time for you to be able to spend more time with your family, and at the same time know that your husband is getting the care he needs. Let go of the guilt and one day at a time do something for yourself...
We all feel guilt, and when we are thinking clearly we realize that we didn't cause this to happen and there literally is no way we can fix it. Still, the guilt, anxiety, frustration, sadness, depression, etc., etc., etc. is there for all of us.
You have chosen to live. Guess what? That is what normal, healthy people do. Rationally you know that you can't bring that angry, aggressive person home to live with you as long as you have chosen to live.
Now that you know he is in a safe place you need to start rebuilding your life.
Welcome to my website. We are all struggling with the same emotions of loneliness, guilt, anger, resentment. We understand and support one another. If you look at the main home page of the website - www.thealzheimerspouse.com- click on "previous blogs" on the left side of the page. Read the Welcome Blog, and then scroll down and read the ones whose topics interest you. I guarantee you will relate to most of them.
Scroll down to the middle of the home page for my daily blog. Today's isn't up yet - I'm working on it now.
Gay, okay you have had your moment of guilt - it is time to get beyond it.
The wanting to go home when in a facility is normal. Most of them get past that. My husband is in a facility and he went through the same thing. He had gotten very agressive and combative and it was no longer safe to keep him at home. He had always wanted things straight and the facts so I just told him that it was not longer safe to keep him at home and I could no longer care for him by myself.
Loving a person and caring for them does not mean that you personally have to do it. If you are not the right one or cannot do it, putting them in the place where they get the right care is the loving, caring and responsible thing to do. One of the positive aspects of putting my DH in a facility was that I got to be wife again and we were able to enjoy each other's company for a while longer.
Getting over the feeling of guilt for placing our loved one in a facility when the time comes, seems to be the one true universal factor about this disease. we can rationalize the facts about how they are getting the needed care round the clock by professionals etc and how we can somehow manage a life for ourselves outside the disease when it happens as well, but like most say here an empty house void of the person we lived our married lives with sometimes decades sometimes only a few yrs. forcing ourselves to take part in outside interests again and having friends and family for frequent visits and possibly a pet to love is a good choice to help transition thru these hard choices. i will probably be walking in your shoes at some point as well so i do understand your pain. divvi
Thank you so much for responding back. This so very, very difficult and to compound the pain is that this is our 25th anniversary this year (Sept. 30). There is 20 yr age difference between us but you would never had guessed my husband's age. He never looked or acted his age and was the healthiest person until about 3 years ago when we started battling high blood pressure, then the bypass, etc.
This website is a godsend. I have tried 2 support groups but they did not have spouses that were patients (only a parent). Thank you, thank you.
There is no question that the daughters feel pain and guilt, but there is no question that everything else that is going on with their LOs is different from what goes on with ours. If they are married, they still have their support system. In some cases they are doing the day to day caregiving, but in many cases they aren't. They are making the hard decsions, and I can understand how hard because those decisions are those decisions no matter who you are when you make them.
Pain is pain. Grief is grief. But there is no question that this is different.
Gay: Today IS my 25th wedding anniversary, and I know that I should be thankful that (i) DH knows my name, (ii) we had a nice lunch out at a neighborhood lunch spot (he does lunch out better than dinner, and I didn't think I could handle dinner emotionally), and (iii) he thanked me for giving him a card and new shirt, but the reality is that he obviously has NO idea why I arranged my work schedule today to come home and meet him for lunch despite the fact the card said "Happy Anniversary." So, he had a nice day, but as so many others have said on this site, it's sad and makes me angry and RESENTFUL to realize that it is always about him and will never be about me again. I had no illusions of a big celebration, but maybe a pat on the back for making it 25 years (which I think IS a big accomplishment in this world) and at least 20 of it, before AD was obviously affecting him, blissfully happy. It is interesting that last year he was actually out of town on our anniversary, and about a month later realized (looking at his blackberry, which is his great coping mechanism) that he had missed our anniversary, and very nicely but with no emotion said "I was out of town on our anniversary; I hope you had a nice day." So last summer he at least had some knowledge of what an anniversary was/is, but apparently not anymore.....also interesting to note that while he definitely still understands what birthdays are, in fact, still understands the need for presents for immediate family and seems to understand Christmas and Easter, all other "holidays" are either just gone from his brain or going. He was clueless as to why I had last Friday July 4th off from work, Father's and Mother's Day---gone, Memorial Day and Labor day---gone, Halloween was gone until he saw the trick-or-treaters coming to our house, Thanksgiving---a time to visit his parents but he doesn't really understand why. Anyway, thanks to everyone for listening! And Gay, did I see you're from outside Houston? I live and work in Houston, and actually drive through Rosenberg frequently en route to our small farm off 90A. Let me know if you want to get together, and I'll send my contact info to Joan.
Joan: I would like very much to get together - my home is not too far off of 90A which is also Avenue H in Rosenberg. Please do send your contact info and we can have a cup of coffee or lunch. My office is actually closed on Fridays but will be going to Cleveland tomorrow for our nephew is going through the "White Coat" ceremony for his entry into medical school. He has helped me soooo much with his Uncle and is truly a blessing and at the most critical time. My husband's daughter is coming to visit Friday the 18th for we are going to look at other facilities and if at all possible perhaps we can meet then. I know that she will have a thousand questions too. Have a great weekend.
Gay: DH and I will actually be out of town/Kerrville all next week with our Sunday School class, but I will send Joan/our wonderful website administrator my contact info, and she can forward it to you. I'll be back in town @ Sat. the 19th. Hope to see you soon. TEXASMOM
Texasmom, Happy 25th Anniversary! my goodness, you are so right, in this world 25yrs together is a special blessing no matter what the circumstances. I do understand how retched it is that our spouses no longer understand the special days or the long yrs spent together. I am ashamed to say ours was 15yrs in March and with all going on and drs etc and being just overwhelmed it wasnt until a couple of days later that I realized it had come and gone without either of us remembering. i did a small belated one too but like you say its no longer the same without their participation of the good times behind us. my best to you both, Divvi
My previous spouse died a few months after 25 years of marriage. I so remember that 'special day' - he was way too ill to enjoy it. I made a special dinner and ate it by myself...
Bill -...........I spent every summer for about 5 - 6 years at Mt. Wesley Methodist Camp in Kerrville. I was there when they brought the cross that stands on the top of the hill...from the youth of Bolivia. I wonder if it is still there? NancyB.