As I re-read my shareposts written over a year ago, I cannot believe that life has changed so radically for me and for Dick this first year of his placement in a small board and care home. Placing one's parents is one thing, but placing one's spouse is quite another --- I speak from experience on both sides. I thought that I would always take care of Dick at home -- it seemed the right thing to do; however, as his disease progressed and he lost his memory of his family and his home, I began to think of what I would want him to do if it were me with the Alzheimer's. I know for a fact that I would want him to let others help him share the care of me. It is such a 24/7 job and as the disease progresses, it gets so very much harder. I know that I was an emotional wreck last year -- so sleep deprived after getting up six or seven times each night to show Dick the way to the bathroom. Funny thing is, I thought I was doing fine, but my children saw it another way. I remember going away to Lake Tahoe -- the first time I had been away alone in many, many years. That week spent with my daughter and adorable grandboys gave me a tiny look into what my life could be like with more help. I felt so refreshed each morning after a beautiful night's sleep and I felt so free. The next week, with my children's support, I began looking for a small board and care home that would care for Dick as tenderly as I had, and lucky for me, I found just such a place. Now my focus is on visiting him every other day and actually looking forward to doing so. There's a trail nearby his house that we walk on and benches to relax on when we get tired. Strangers stop and talk or let Dick pat their dog if they have one --- it's a beautiful experience, one that I aways want to have when we head out for our stoll. I'm so grateful for the truth of that feeling. I went through months of being extremely angry at all of our friends and most of our family who seemed to forget this dear man in his time of need. Few came to visit, including a brother who lives close by. I spoke up to many people about this lack of visitation --- it hurt me deeply. I wanted others to come by for a few minutes now and then just to bring a smile to Dick's face. He wouldn't know them and would certainly never remember that they come, but it seemed important to me that they make the effort, hard as I know making such an effort was. However, as time went on, I luckily lost that anger--- the anger that was taking up so much space in my brain and such an emotional toll on me. I began to see the importance of letting people make their own decisions about how they would deal with this father, this brother, this friend. It freed me emotionally and the result has been these glorious visits with my husband -- relishing in the smiles and in the occasional words of English that he sometimes speaks --- even an "I love you" now and then. Who knows how much he understands in that brain of his -- perhaps more that we think. What I do know for sure is that he has people around him who love and respect him and who care for his every need. Because there are only three men and three women in his house, he gets an amazing amount of attention. And that care, of course, frees my mind of worry and I am able to live an enjoyable life. On paper, it sounds selfish and the guilt is ever-present. In my heart, though, I know I've made the right decision for the two of us.
Teri, hi I am Connie I read your share post this weekend. I joined this site about a month ago not really sure how long time seems to have no meaning any more. It is taking me quite a while through all the share post because my time is not mine any more. My husband has alzheimers, COPD, congestive heart failure and over five heart attacks. He is 66 I am 56 and he is also a double amputee, so you see we have and are going through a lot. He still remembers me and our granddauther, we are here all the time. As the days pass he is having a harder time remembering things words and people. I keep being told I need to consider hospice or nursing home care. Your story has helped but I am still not ready to let go, I think you helped the most by saying what no one else has you did it after he couldn't remember the bathroom or you. I know that may not sound like much to most people but it kind of gives me a gauge to go by. You, we the spouse are the only ones that can make this decison on the when where or how. It is a difficult weight to carry but I as you love my husband so. He has been my world and life for over 28 years. I don't know if our family, friends neighbors get so wrapped up in their world that they can't see ours but it is so hard and so very isolating. My husband is vietnam vet who is 100% disabled, his care will have to be there. I haven't found the courage to visit the alzheimers unit yet. This is so very difficult, I know I have to face this. I have lived in denial for two years that they made a mistake and would find out they were wrong unfortunately they weren't as I have learned he does have it and he won't get better as I had hoped. When he developed PAD and it got so bad they had to amputate his legs within six months of each other due to gangrene(have you ever smelled it or seen someone with it?) and I had to sign the papers to amputate I thought he would hate me forever when he woke up. He was in such agony and it all seemed to happen so fast as with the heart attacks, he didn't hate me he still loved me. This wonderful proud man accepted the loss of legs with a grace you wouldn't believe. I loved him even more for it. Still thinking we would have our happily ever after and then COPD and then congestive heart failure I think how much more can this mans body take, and how much more can I. We joined forces and continued on but now the worst has happened I will never forget the day over two years ago we are at the doctors office and I was telling his doctor he's not using his oxygen 24/7 like told when she looks at me with tears in her eyes and as if he's not there she says Connie I have had to tell many patients this but this one is the hardest you two have been through so much already but it's not oxygen that is wrong with Ray it's alzheimers and I have suspected it for over two years. She ran all the test and called us back in, everything told her that it was indeed alzheimers. She started him on medication and the roller coaster ride began. One day I would see him, he would do something so normal that I would doubt it, the doubt is all gone and now I am trying to play catch up. My granddaughter helps me our parents are to old to travel much and everyone else is either to busy or can't take it other then to make the phone calls pretending nothing is wrong, I don't think I am really angry with them just confused. My new saying is get a clue. They play this game of he will get better and complain about everything when they talk to him it just upsets him so. I wake up every morning and wonder who will be here. It's not always my husband I have called it alzhemeimers and the stranger when at first he became so angry. That started when the VA took his power chair from him, their reason they can't be liable if he wanders and i get that but he has COPD and congestive heart failure and can't use a manual chair much it tires him to much. I would like to take the carpet out and put in hard wood floors, he could move better and breathe easier but that is not an option. I feel like when I have to take him for his doctors visits at the VA they continually try to strip him of all his dignity and in lots of ways that is all he has left. This man gave our country 20 years and 12 days of his life he spent two tours in Vietnam and flew a helicopter. Why this why now he's been through so much. The doctors say pray for the congestive heart failure to take him. How do I do that when I love him so and am trying so desperately to hang on. I have come to the realization that one day soon I won't have a choice and I admire you for being able to do it I am just not there yet. I get up early and get on my computer, they are now saying join an alzheimers group here but I stayed in denial to long and it is to late and it is to late now. I don't have time to join meetings here the only time I have is early morning when he is finally fast asleep. I have ADT so I know when an out side door opens I am also going to get him a braclet, they have those here in Temple. I have as best I can Alzheimers proofed my house. It was built handicapped acessable so I am lucky in that. In the beginning of the congestive heart failure he was in hospic and not expected to survive, they gave him haldol and he had a very violent reaction to it and was rushed to the hospital. he survived and now this that I know there is no getting better, as the days pass it is getting harder and harder to breathe for him, I am considering Hospice agiain because he now has a new doctor at the VA and she wants to take his pain med away, she told him it was killing him. He laughed at her an ask her if she had read his record that he was dying any way, then she said if you take it don't drive he again laugh and said have you read my record I have alzheimers I can't drive. He left that visit so upset that he has been in a down ward spiral ever since. He stays mostly in his room, he chose seperate rooms after he lost his legs because he needed a hospital beds so you see 15 years and seperate bedrooms our lives have not been the same and now this. The one thing that hasn't changed is my love for this man, he has faced so much we have faced so much it's hard right now because not only do I watch the love of my life leave a little more each day but also my best friend. He was the leader he made all the major decisions and now I have to. I know we had a very old fashioned relationship but it worked for us. I now am fighting a battle alone and in uncharted waters. Bills and finaces he always took care of. I am having to play catch up and learn so much so fast. It's my fault I should have been more involved but its to late for regrets. He did all the right things before, Power of Attorney, Will but I still have so much to do somedays it seems so much I can't do it then I get on here and read so much and try to learn everything about alzheimers I can. What I have learned is they really don't know a lot. Every patient is different and their are no hard fast rules, you have helped the most by saying when he couldn't remember you and home any more. Ray tells me I will have to put him some where he fears he will be violent he already has become that with his mouth when he is angry and frustrated. I will check out the alzhemiers unit at the VA but in realty in my heart I think it will be hospice, he weaks more each day. I will surive this at first I thought not but the people at this site and my ever present 19 year old granddaughter have shown me that. You have show me there is life with alzheimers and we will both learn what life after alzheimers will be. I am so happy you made your decison and are now at peace thank you I will get there it will just take a little time. Sharing the life of living with a loved one with Alzheimers. Your friend Connie
Dear, dear Connie --- your reply to my sharepost made me cry. I don't know how some of us manage to live through these unforseen twists in life, but the the truth is that we do. What is the other choice. First of all, my hat is off to that nineteen year old grandaughter of yours --- we all need that kind of a family member! My son is one to me -- thank goodness! Secondly, when the time is right for placement, you will know what to do. What I already love about your husband is that he is talking about such a move with you. Guilt is such a huge part of this disease and the decisions that must be made in regard to it that his permission to consider this option is huge. If and when that move takes place, please know that it is not the end, but rather the beginning of a whole new life that you cannot even yet imagine. I am such a part of the family at Dick's board and care facility --- I love them and they love me. Of course it's not the same as having him home with me, but in all honesty, I was no longer able to do that job and keep my sanity. It's hard to admit that -- very hard -- but it is the truth. So hang in there until you know what to do, and trust me, you will. I strongly urge you to get someone to sit with your husband so that you can attend a support meeting. At first it can be strange, but after a few months, the bond formed will be amazing and you will wonder how you did without this kind of support from people in the know for so long. Trust me on this. For one thing, you will learn how to teach your friends how to just go along with whatever your husband says even if it involves not always being completely honest with him That was my first lesson, and it has helped make my relationship what it is with him today. I have no expectations of reasonable conversation --- I just want my words to bring him a small measure of happiness. All my best to you -- you truly are a saint! Teri Bailey
Hi Teri, Thank you. I am not a saint and I truly don't want anyone to feel sorry for me, I don't, I chose Ray as my husband and I have never regretted that decision. I will post a picture of him for everyone to see, the first time I saw him in his uniform so proud and tall, I barely touched his shoulder, I still look at him as I did the first time, yes their have been many changes in him but to me he willing always be that handsome hunk of a man that I married. It's stange before I met and married him I don't think I truly valued worth from the inside more then the out side but that changed when I met him and that's how I knew it was true love. He had his faults but he also had a heart the size of Texas.Our life together has been good and the bad has made me who I am today. I wish it handn't been medical problems but in truth of fact that is what I think helped me be prepared for this if such a thing is possible. I now am the one that holds our memory's I know if it were me instead of him he would be here taking care of me and trying to make my life as happy as possible. Our life has been filled with a lot. Our granddaughter is our pride and joy as is the wonderful little great gradson she has given us. No matter what this child has always been here for us, she loves her poppy so. He has not only been her grandfather but the only father figure she has had. Together we have five children and nine grandchildren, she is the only one that for what ever reason has her head on straight and has had to grow up so fast. She graduate high school at 16 and started college the same time (while working two jobs) she graduated valdictorian of her class. She is beautiful, brillant and is very loving. She had many problem growing up and chose to fight back and become the wonderful young woman she is, she is a care taker she tries to take care of everyone and would the world if she could. In so many areas she has put her life on hold. She is newly married and her husband is as wonderful as she is, they are both such a great help and he loves her son as his own. I talked to him yesterday and urged him to get housing to get them moved into their quarters, while they wait they are staying here. I love having them here but she is seeing more then she should, she needs to live her life and have the happy family she so richly deserves. I hate to say this but my daughter and her husband raise thier kids in a completely disfunctional family. She was born while living with us and bonded to me, when her mother married and moved away when she was three I felt as if she had taken my child, I stood back and let her go, looking back if I had know what would happen to that child I would have fought to keep her. I didn't but spent as much time as possible with her, she had a rough life but made the decision to take all those hardships and becaome who she is, smart, beautiful and wants to save the world. She will go far in this life and leave a huge mark on this world. Ray was quiet yesterday but had a fairly good day. I go back to the Dr this morning to see if te phenomia has cleared up, I still cough but I feel much better just very weak, it will take a while but I will get better. Thank you for everything you have said you have given me the hope and courage to know I will face that decision and in my heart I will know when the time is right. My mom and stepfather are doing as well as they can be right now. Thank you for being my friend. Connie