Thanks for the compliment on my little neck of the woods. It is great but extremely rural so choices for ALZ care are extremely limited. Memories such as the one you shared about the Red Cross Shelter are what we cling to to keep some level of sanity for ourselves. Eight years of being a caregiver is a long time. If your health is suffering it may be time to seek help. It will be a decision only you can make. Whether seeking in home health or placement it can sometimes be a long process. No matter what family, friends or medical people say they cannot know what it's like for you unless they have been the sole caregiver of an ALZ spouse for eight years. Take care of your health, Carolyn. Everyone here will support you because we do understand.
Oh, Alim, Thank you so much for your reply. I totally understand rural choices being limited because we, too, live right outside city limits of a small town. The ALZ. Organization has a meeting the 2nd Tuesday of each month in the town 30 miles away. I went to my 1st meeting in Nov. It was a small gathering of maybe 15 caregivers. They showed a film and then had an open discussion. Since it was my 1st time, the instructor ask each of them to introduce themselves and tell me a little bit about themselves and their spouse. It seemed they had the same story as me. I looked into their faces and every one of them had a look of pain and sadness. I thought about that a lot after I left and wondered if I had that same look. Tell me about your circumstances if you don't mind. I would love to hear it if you feel comfortable telling me. I always want to Fix things. It's so frustrating that I can't FIX this.
Carolyn , My DH has been in an ALF/NH since March 2011. That was when I reached my breaking point. He is 69 and I'm 66. Married almost 48 yrs and have a grown DD & DS. He was officially dx'd in 2008. He walks constantly in a merry walker and will occasionally feed himself. Those are only two ADL's he retains. As a former marathon and 10K runner he is in good physical shape. He was initially given resperidal, which made him a zombie. He was switched to ativan that turned him in to the wild man from Borneo! He is now on zoloft only, and remains calm. The only aggression he ever had was when being changed or showered. That is a common aggression problem for some ALZ/dementia patients. I have resigned myself to the fact that it is what it is and nobody can fix it. My main complaint at this point is with the total amount of ignorance in dealing with their symptoms by medical personnel. I know that we spouses are the intellectual ones. In visits to the NH and hearing "trained caregivers" argue with the ALZ/dementia patients makes me want to slap somebody and that somebody is not the patient. We all just take one day a time on this cruel lonely journey. Glad you found Joans site because everyone here understands.
AliM, an ALF/NH is so expensive. I think it's between 5 and 6,000.00 per month and the one local NH is just not that good. Others are in next town, 30 miles away. I want to keep Alan home if I can. Maybe I need to hire more in home help now and see how that works. I believe I've reached that emotional point. Alan is 82 yrs. I'm 68. He also has congestive heart failure. A test performed last Feb. when he was hospitalized showed only 20% of his heart working. Heart specialist said he'd probably die in his sleep. His regular dr. said about all I could do was keep him comfortable. The way they were talking, I thought he only had a few days left. I don't know what to do, AliM. I've tried so hard to keep him from falling and out of the hospital because that short hospital stay, from Sunday Night until Wed. Morning sure affected his ALZ. into a downward spiral. I am so tired. Middle of the night or middle of the day, it's all the same. Hard to tell them apart.
Carolyn, You're right about the expense for ALF/NH care. Fortunately we had taken out LTC policies on both of us years ago that pays part of it. I have to throw in all of his social security and part of my ss to cover the rest. I have never lived a high lifestyle so I am making it okay. At the time of placement I was in such horrible mental, emotional and physical state that I would have given up everything and lived in a pup tent. All I wanted was for him to be taken good care of with dignity. If you want to keep Alan at home maybe you could discuss your needs with a home health agency to help with your decision.It sounds like you need help and after 8 years of caregiving you definitely deserve it. I admire you greatly for that 8 years you have already been his caregiver. Take care over there on the other side of the Smokies and I wish you the best in getting some help with your DH. We're here for you and we understand.
AliM, how in the world did you know it was time for a NH? Did you have advice from friends, doctors, etc.? Were you able to figure it out by yourself? I simply don't know what's best. Guess I just figure everyone wants to be home. We could pay a NH if that's what's needed. Did your DH accept the NH and not get any worse from the transfer?
Carolyn - you have to be the number one when it comes to this. Number one because if something happens to you, who will take care of him? Whether he is at home or in a NH, you still have to take care of him. In a nursing home you have to become his advocate and from what others say is often not easy.
My MIL refused any help with my FIL. She dropped dead of a massive heart attack one day in their home. Somehow he had the wherewithal to go to a neighbor and grunt sounds. They knew them well enough to know something was wrong and took him back to the house where they found her dead on the floor. There had been no plans made to place him because my MIL would not hear of it -now there was no choice. We managed to get him into a VA Alzheimer unit but since he had not been seeing a VA doctor had to admit him to the psych ward and as the doctor said - go in the back door. He lived another 9 years.
Point is - you have to take care of you. If you are getting tired, depressed, worn down, sick, etc - you can not be there for him. Others will come along to tell you, you first, our spouse second. They will not survive AD, but you can - if you take care of yourself.
I know in my heart that you are right. I think of the flight attendant always saying to put your oxygen mask on first and then put one on your child. It makes sense that you can't help anyone else if you don't take care of yourself. Well, okay, but first, let me run and do this or run and do that. End of the day? Day's gone.
Carolyn, Decision time came for me when my painful back and my mental stability were both about gone. I could not leave the room he was in for fear of him doing something dangerous. (poor dear had no idea that he could not punch buttons on a microwave and stand and watch it til smoke was pouring out) He did this twice in one week even though I had microwaves unplugged both times! My DD an DS encouraged me to place him for his safety. Fortunately for me he has always been a gentle soul so the transition in placement was a whole lot easier for him than it was for me. The guilty feelings will never be gone completely but very little about this cruel ALZ will ever be gone. I admire the spouses that keep their loved ones at home. I was just not one that could. We all have different breaking points. He has been placed for 2yrs and 9 months and even with all the ups and downs I do believe I made the best decision for him and for me.The NH is 5 miles down the road and I visit often. I hope all goes well for you in making your decision for your dear Alans care. Understanding will be bountiful on this website.
AliM, Alan fell in the bathroom last week. I heard a noise and ran to him. No bones broken, Thank God, but he had a place on his cheekbone, right below his right eye. I tried with all my strength to lift him, he trying to help, but unable to understand. He had wet his PJ's and had one leg out of them. I pulled them rest of the way off. I got a blanket and put under him and then trying to pull him on the blanket to the bed room. The blanket kept coming out from under him. (We have tile in the bathroom and hardwood in the bedroom). I got the phone to call a neighbor. Alan said "no". After one hour, twenty minutes, I got him rolled back on the blanket and instead of pulling the blanket, I took one of his ankles in each hand and pulled him to the bedroom. (I would pull a little. Then we both had to rest. Then pull some more. I do not see how I was able to do that). He was then able to help a little, with me placing his hands around the foot bed post. I was so happy to have him on his feet, even if he was wobbly. Got him walked the three or four steps and into bed. I wanted to cry but was too tired. He was also exhausted. He weighs 176. I weigh 116. We both had sore muscles the next day. I will not try that again. Will just call for help. I kept watch on the swollen spot on his cheek and hurt for him because he had it. I hurt for his ALZ. condition. I just hurt inside. We've been married 34 years and he's been my rock. I have 2 daughters from a previous marriage and when my oldest daughter died at 27 years old, in my arms from Congestive Heart Failure and severe Diabetes, I know I would not be here today had it not been for him, caring for me. He deserves the very best and not being pulled around, naked from the bottom down, on the floor.
Oh my dear. Carolyn, please read your post. If you read that, and it were written by a friend of yours, what would you tell her. How much you have done already. Charlotte and others are so right. You need to take care of you, because if you don't, there will be no one to take care of your DH. I know how hard it is because I've done exactly the same thing. We are not doing our spouses any good if we kill ourselves in the process. Please think of yourself so you can help him.
My wife's sisters were encouraging me to place her for at least a year before I did. L was placed much earlier than many described here, but her behavior was wearing not just on me but our teenage son.
Carolyn - until you can make the decision and find a place, call the fire department to inquire about help if he should be down again and you can't get him up (help in an non-emergency situation). There are some here that have used the EMT to help many times. Even if you have volunteer fireman, there should be a couple that would not mind you calling if needed.
Carolyn, Your ordeal is an aspect of caregiving that only another caregiving spouse would understand. I remember an an occasion when I had given my DH a shower and then he sat down in the bathtub. When I tried to coax and pull on him to get him out he pushed his weight down and refused. I got myself a pillow, threw a towel over his midsection,and I layed down in the floor and went to sleep. I woke up and hour later and he was still sitting there with a blank stare. I put one of his hands on the grab and took his other hand and he calmly stepped out.The cruel ALZ disease! Hopefully you won't have to endure such incident as the one you described again but if you do please call for lift assistance. Here we have volunteer 1St responders who are usually on the scene within 5 minutes. You might want to advise your local fire or police department about your situation in advance just in case you need assistance. You do not want to hurt yourself and be forced to make an immediate decision for his care. That would be overwhelming agony. Take care of yourself Carolyn.
Thanks so much for advice on calling responders. I have promised myself that I will not put him nor I through that again. I will just call. How we try to do it all and forget we're only human.
Carolyn, I met a local First Aid Squad member at a knitting group I sometimes go to and was talking about DH falling and how hard it was to get him up. She said to call 911 anytime and tell them it is not an emergency but that I need help getting him up . I was afraid that they would insist on taking him to the ER but she said they wouldn't as long as he wasn't hurt.
I never did have to call them and now he is totally confined to bed in a hospital bed next to our queen bed.
Mary is right. I had to call 911 several times when Claude would fall and I was unable to get him up. I always said it wasn't an emergency and they would come in a few minutes without lights and sirens. One time he pulled the TV down on himself trying to get his balance and did hurt his back. They came immediately and took him to the hospital.
Getting him into my daughter's SUV to come home was difficult. It took two EMT'S and a male nurse to get him in the front seat. They told us if we needed help getting him out of the SUV and into the house, call 911 and they would come down and help us which they did.
We almost got to know them on a first name basis -:) I mentioned one time how embarassed I felt having to call them and they said no problem - that was what they were there for.