My husband has been living in a VA home , dementia ward, for four and half years. During that time, I have brought him home approx. 4 times...He has not been here for almost two years. Recently, I have been longing to bring him home for a weekend stay. The staff at the VA believe he would enjoy being home and think I will have no trouble during the stay. Soooo...I have hired a retired nurse who is a member of our church, to stay with us during the weekend stay. She will attend to Earnie for his physical needs etc. She will stay the night also. My dear son, has offered to take me to get his DAd. (He has to leave work early). Earnie is now in a wheelchair, is very calm, so I am going to take a chance and see what happens. I know you fellow spouses will understand my longing for him to be here with me away from the ward where there is no privacy and the antiseptic atmosphere.
Although we have been married for 57 years, my love is not my man any more...I have had to accept the person he is now. I know this trip is for me more than him . I will report what happens ....if he is unhappy, I will take him back to the VA and not attempt any more trips home.
He cannot talk to me, knows me most of the time, other than that I don't know how he will react. In the past, he would pace the floor when home, and act sometimes like he wanted out to go only he knew where. He would get sundowning and be adgitated but he has not acted like that for a long time. I hope I don't get disappointed but have to try .
carewife, I think I understand why you want to do this, and I will have you and your husband in my prayers this weekend. I want you to understand that this may also be your way of saying a final "goodbye" to the man you have loved and cared for for over 57 years, even though he is not the same. I hope this visit will be all you want it to be.
carewife-now that my husband is mellow I have thought of bringing him back home. What is stopping me is that I have a new life and am free to come and go as I wish. I lost so much of myself during my caregiving time that I am still healing. Sometimes I think I am being selfish-then I remember that the disease will progress no matter what I do. Bill is stage 6-7 and doesn't seem to care or notice anything any more. This isn't easy.
bluedaze, You are not being selfish. You are maintaining your mental & physical health. Continue to heal. :-) If he doesn't notice, then you can at least enjoy your life. Finally. Even if that means just being alone and peaceful. Get your rest & make up for lost time. It isn't easy, but I think you have made the best choice under the circumstances. And plus, you wouldn't be funny anymore!
You have to do what your heart feels is best. It may give you some peace to have him home again for even a little while. We will be thinking of you and hoping for a good visit for you.
Thank you for your prayers, Mary. The viait went smoothly with no conflicts ....However, I have decided that I won't attempt to bring DH home again as I don't think he knew where he was and didnt care. He watched the TV and appeared to like the baseball game on the tube and the Olympics. Two of our children and their families came over for dinner and he was very calm with them but didn't appear animated at all. I have concluded (as I already knew intellectually) that my sweetheart is truly gone and we no longer have a connection. We are still bonded together in love and that can't be destroyed but he lives in another world where I can't go. I am not sorry I attempted the visit as I reaffirmed the knowledge that I am truly alone and must make a life for myself. I suppose we spouses keep a tiny hope deep in our heart that we can find our dear love's individuality if we search deep enough but I have found that is not true for me. My Earnie is truly gone and a dear stranger who is desparately ill remains.
Carewife, when I first saw your post about bringing your husband home for a visit, I was going to write then, but, I thought I would wait and see how everything went for you.
I too brought my DH home in April for our 25th Wedding Anniversary, and he also had no idea where he was and like your husband, didn't really care. We had no problems getting him back and forth, but, it just hammered home the fact, that we no longer have the connection we have always had. I also thought just having him home and being able to be with him without being at the NH would be so wonderful, and I did enjoy him being there, but, I too had to face the cold, hard, fact that I am now alone. It hurts so deeply, but, we have no choice but to make a life for ourselves.
My DH is truly gone now also, and there is a stranger that has taken his place. He is so sweet and smiles all the time, but, there is no communication and he is definately going to a place that I can no longer go with him. Just like everyone else, we had the hopes and dreams of a wonderful retirement, and now I face this alone. Our love for each is so strong and that will never change. I will always be there for him to hug him, give him kisses and tell him over and over again just how much I love him, but, I know deep down in my heart that I am having to move forward with my life without him. I also can relate to the part on keeping the "Tiny Hole" deep in our heart that maybe we can have that special moment where we can connect again, be able to experience our love one's individuality, but, I also know that's not true for me any longer. That part is now gone.
My heart truly goes out to you as I do know the emptiness and sadness you are feeling. Know that you are not alone in this, as I experienced the same thing and I too am having to try to move forward.
Carewife and Kay Kay - My eyes are filled with tears as I read your posts...I don't want to go down this road any more...I don't want to have to say "my spouse lives in another world where I cannot go"...This disease is so so hard to deal with. I'm tired...i'm just so tired. And now tonite, just very sad. I don't cry much any more, but tonite, I cry. God bless you both...
Yesterday I took DW to Day Care, including through lunch. When I was sitting having my lunch, alone, I realized that I missed having her just sitting with me while I did other things (such as computer work). I'm not sure having her in Day Care yesterday really helped me, since everything I did was at home. My justification for taking her there was that I felt I should maintain the usual pattern of Day Care every Mon, Wed, and Fri mornings, with occasional spill-over into afternoon.
marsh, it is time to start rebuilding your own life. In another thread someone's doctor told them that starting now, it was their own life and their own health that was most important because nothing they did was going to change things for their LO. And that is true for you too.
And me too.
You don't have to have something wonderful to do every time your wife is in day care, but you might want to look for something that is going to happen every week on Monday morning. Meet with a friend or two and go and do whatever with them and do it every week.
And all of us need to stop justifying our desire to see other people, take care of ourselves medically, or just have a couple of hours in the house with no responsibility on a regular basis.
I agree with Starling. As long as you have got her started going to the DayCare and she will go I would not disrupt the schedule. It will be good for both of you to get used to managing on your own.
I wish I had the opportunity to do the same with my husband but he mentally doesn't mix well with people and his spinal stenosis makes it difficult for him to get in and out of the car.
But, I do cherish the opportunity to get him in the car most mornings and go to Mc for breakfast or eat in the car, then do errands with short stops for me to leave him in the car with the ac and go in WallMart, Lowe's, garage sales, etc. Too soon, he will be unable to do that. He doesn't have to bathroom very often so usually 2 1/2 hours later he can go to the bathroom at home.
Every morning I see groups of men in McDonalds, Hardee's etc. having coffee and discussing everything from politics, to current news, etc. and I think that is a good option for the men. On rare occasions I get out without him I go to the library, Mall, garage sales etc. , anything to get me out of the house and AD off my mind for a while. I don't do house work very much anymore (not that I never did, but less. I have a wonderful lady come weekly for 4 hours to clean, laundry, whatever and this gives me more time to pursue things away from home. She also keeps an eye on my husband now while she is here. In our area it cost me $40.00 for 4 hours. If you can find someone reliable like I have I would highly recommend it.
Thank you both so much for your input. There is no doubt that I know where your hearts are. My DH is also in a memory care facility-really nice place-but since his meds have changed and he is much calmer now (but seems so medicated to me) I have been battling with myself whether to bring him back home to live. He has only been in facility since June and last of July in Geri-Phsych for med change. His mind is in another world most of the time but does know me but gets grandchildren confused. It was so heartwrenching yesterday evening when I went to see him after work - when he had to go to the bathroom, I realized that he had the Depend pull ups on which only means that he is becoming incontinent - the last vestige of independence gone.
It is just so hard dealing with this disease and all of the emotions that comes with it. The inner struggle of whether to bring him home or night is with me when I go to sleep and when I wake in the mornings and only hope that I make the right decision.
About 6 mos. into my husband being in the NH, I too wanted to bring him back home. I missed him so very much, but, my daughter sat me down and had the "Mother/Daughter" talk and this time our daughter did all the talking. She just flat out told me that I really need to think about my decision. She said she was so afraid that this time they might lose me due to the stress and physical/mental strain I was under. She said "Mom, I love you, your two grandkids love their NaNa and Pop also loves and needs you very much. She said Mom, give yourself some more time and please re-consider. Well, shortly after that my DH got his feet tangled up and fell. Due to the progression of this disease, he can no longer walk, eats pureed foods, is incontinent, needs a 2 person transfer in and out of bed into his wheelchair, so, he is now totally dependent and needs 24/7 care.
I was blessed to find a very wonderful Care Facility and the staff and residents there are so caring and we are like one big family. I have met so many new friends and everyone gives you hugs, etc. So, it has probably been a little easier on me, but, that is not to say I do not have my days where I want him with me so bad. But, unfortunately this disease will keep marching on know matter what I do, so, I just try and do the best I possibly can and try not to second guess myself. I would love to have my DH back home with me and be able to enjoy each other again, but, unfortunately, it is what it is and this is only a "Dream", reality is this will never happen again. I spend 3-4 hours with him everyday and we enjoy our time together. It is quality time. I take him for strolls, talk to him, read to him, watch TV with him, etc., there is no communication, but, I know deep down inside of him, he knows that I truly love him and am doing the best I can do under the circumstances.
It is very hard dealing with the emotions that come with this disease and it is also very hard to say what is right or wrong in dealing with this disease. All I can say is for me, I feel that I have done what is right in my particular circumstance. Nothing with this disease is ever easy, we just live one day at a time. Like I said in my earlier post, I now must try to move ahead with my life, because I have now accepted that I am alone and we will never have the relationship and marriage we once had. It is a different kind of relationship now and I still truly love him with all my heart and will always be there for him !!!
Thank you so much - your words helped me tremendously. My 18 yr old grandson had that talk with me just two days ago, he really is quite wise for 18. His concern was for me and my health because of the constant stress I was under when his PawPaw was home. I missed his Senior year activities (and there were many) because of caring for my husband, but my children and grandchildren understood and never complained to me. He is now starting his college life (Michigan St. Univ) and I will be involved as much as I can with him so far away now.
I have just started participating again in the grandchildren's activities (7 of them). Tonight after I visit my DH, I will stop by my granddaughter's volleyball game - it is truly rewarding to watch them grow up. God has blessed me with wonderful grandchildren and the 5 older ones are soooooooo involved in sports. The youngest are 5 and 3 yr old boys so I know that their days are coming too.
It has been very hard to move ahead with my life because acceptance of it without my DH is very difficult for me but at least he is still here and I see him almost every day. He has been my rock for 25 years and now I am his, or as he calls me "his angel".