After my long saga with the VA and nh and hospitals, my dh got transferred to Gladeview 10 minutes from my home. It is a place that overlooks Long Island Sound with a marina next to it. It has lovely grounds and the inside lobby looks like a very nice hotel. The rooms are nothing elaborate but every worker from the admissions person to the aides to the secretary and nurses are verrrry nice. They totally understand my situation and have many alz patients so his situation is not new to them. They are going to evaluate him for phys and speech therapy and I will have the full tour tomorrow to find out about the recreational therapy, etc. They have a gift shop and coffee "shop" in the lobby. I think the coffee is free. Any way, I am sooooo happy not to have to drive so long each way to visit and will be able to see him whenever I can. I will be able to easily take him for walks (which he dearly loves) and the water is really his first love so I can't think of a better place for him . My brother called me and we laughed. We always dream about one day having a house on the water (ocean) but unless we win the lottery, it will never happen. He said" Well, I guess your hubby finally is living overlooking the water!! He made it before we did!!!" And I am so happy he did.
I visited my next door neighbor last week. She is the woman who placed herself in an ALS with neighborhood help because she no longer could live alone. She also ended up in a good safe place with beautiful surroundings (lots of green space to look out on and walk in) and exceptionally nice staff. Because the staff was working on the emergency call button system we got to see a bunch of them as they came in and out of her little apartment.
Kathi, I really hope your husband's situation is as nice as hers turned out to be. It really does exist.
Have been visiting new nh since Thurs. Everyone there is fabulous. Unfortunately, when I saw him Thurs, he was very sedated. I knew they gave him a "little" extra to cope with the ambulance ride and change (once again) in venues but was hoping he came out of it. Yesterday, he was the same way. The few times he could talk, he seemed to have "marbles" in his mouth. I was fearful he may have had a mini stroke. Everyone at the nh was concerned. They changed him from a semi private room to a private room with a low bed. They do not use bed rails or restraints. He ate ok. He really did not seem to know me. On Tues, when I last went to the hosp, he was alert, ate well, knew me and walked with the rec. therapist holding his arm. This tremendous change seemed today like it was permanent. When I got there, he was lethargic. Did not respond to me and they said he ate 25% of his breakfast. Soon after I got there, I went to see his nurse and asked her what she thought of my dh's condition. She said this was the first time she saw him and it was difficult to answer because she didn't know how he was before. I was very upset and explained the differences I saw in the last week and I asked her if he might have had a mini stroke. She said his vitals were very good but she would call the dr (of course, this is a holiday weekend and you know he won't see a dr till Tues). Even if it was a mini stroke, I know there is not much they can do. I stayed with him and saw that he ate ok for lunch- still not as good as he had been eating. I was with him all day with no change in alertness. He has no reaction to hand movements in front of his eyes. I called my niece (who has abandoned us since her Moms death-dh's sister). I told her she might bring dh's Dad to see him tmrw because I didn't know what was happening. I was obviously upset and told her I did not want to call my fil because he is 86 and lives along. I would worry about how he would respond if I called him. She told me she would take him to see dh tomorrow. I also called my daughters boyfriend. I explained the situation. My daughter (age 24) is having a terrible time dealing with her Dads disease and only saw him once in the last 6 weeks. I told the boyfriend I would leave it up to him as to what he felt she should do. He was upset about dh (he has been wonderful with my dh). I hung up and my daughter called. She told me they would be up to see her Dad. This year, she has had 2 close friends die in car accidents. The most recent was 2 days ago and today was the wake and tomorrow the funeral. It has been a very difficult year, She is not feeling her best either. Was diagnosed last yr with thyroid cancer and went through surgery to totally remove the thyroid and had the radioactive treatment. Has had bloodwork but not a new scan, which she should have had a month ago. The dr is so busy, she won't have an appt till mid June and she is always tired and hot. I am concerned. I have asked her to get her med records from the surgeon and endocronologist and submit them for a second opinion. Anyway, when my daughter arrived with her boyfriend, she was visably shaken and upset. My brother had come 20 minutes before and was trying to hold up for my sake but also broke down and cried. When my daughter came in it helped him to calm down and she never knew he was crying. It was better that there were a few of us because we could have a conversation without focusing so hard on dh. After about 2 hours, suddenly, dh opened his eyes wide. He moved his head forward and we were all amazed. He "spoke" a few garbled words, ate all his dinner but a short time later reverberated right back to what he was before " "the awakening". I stayed till they cleaned him up for bed and asked his aide to please keep giving him water as he really gets dry and loves to drink. I left, not knowing what tomorrow will bring. I don't know what to expect. My excitement of finally getting him close to me has faded. Thank God that he is close because being 10 minutes away, I can spend all the time with him I want to and feel safe coming and going as I please. I feel like my heart has been torn apart and I can't stop the pain. I just want to go to sleep and wake up and find that all of this is a terrible nightmare that went away. But who am I kidding. We all know the reality of this disease. I just want it to end.
If you have not involved Hospice yet it is time. Most will work with you and your LO in the NH setting. Hospice will help you find peace with these changes and allow your DH to live the rest of his life as comfortably as possible. In your messages from the last few weeks it sounds if his body has begun the process of shutting down. It is ok if he does not want to eat, it is ok if he loses weight, it is ok if he spends his time resting comfortably even if he seems out of it.
Please allow the professionals in to help you through this time. They can give you advice, answer your questions and help guide you through this difficult time. Your last sentence says it all "I just want it to end", you are nearing that time so it is time to stop fighting for what was last week or last month and be his advocate for a comfortable peaceful end.
I recently read the booklet "Hard Choices" that somrone else recommended from this website. I think I understand what is happening. I did make the choice of DNR after reading the booklet. I am all for a compassionate, peaceful end and I am taking in all of your advice. Thank you for your support.
Are you sure of the meds he's being given, Kathryn? When my husband went in a year ago (and I was out of town) they started him on seroquel 3xd, from none, because he freaked out when they were moving him (with his bad leg) to go have an mri. I got him home, dropped it to one and then nothing, and he recovered, but he was very woozy at first. It may be that your husband's shutting down, and I, like you, have read the book and agree with it - but it may also just be a reaction to all the changes. At least you have him nearby now. Imagine how awful it would be if he were still far away!
i would also check for uti, with all the new changes and meds he may have become dehydrated. always check for uti when any 'changes' happen out of the blue. to be safe. divvi
Until I found this website, I did not know about UTI and their effect on ad. Saw him today, pretty much the same. He ate lunch and would respond to me but again, the garbled talk. After he ate (which he does with his eyes shut), he almost immediately faded away. I think the dr will be in Tues so we'll see what he thinks. They also have him slated to see the psychiatrist Tues. I'm hopeful that he may decrease his meds. They say he listens to the family so I have hope. I'll be back tomorrow, hoping for the best.