My day was diagnosed with Alzheimer's in July of 2005. At that point, the memory loss was not substantial. In December of 2005, he started hearing voices which resulted in a trip to the ER. He was placed on Zyprexa and all was stable. His decline continued rather repidly and in June of 2006 he quit driving of his own accord. In the last few months, he has started hallucinating. His hallucinations are horrible for him. His hallucinations resemble plots from horror movies. At one point, he thought he was dead. I could not convince him that he was not dead.
My dad is 76. When he was diagnosed in July 2005, he was self-reliant. He lived alone and was able to fix his meals or go to restaurants. He was able to administer his own medications from a pill box. However, now he is completely dependent on someone. He is not incontinent, but does have accidents occasionally. He needs help dressing and can no longer shave or brush his teeth. My question is in regards to the progression of the disease. His decline in 1 1/2 hears appears to be very quick. Based on your experience, does his decline appear to be faster than the norm?
Also, after several weeks of medication changes, we have checked him into a psych hospital to try and get his hallucinations under control. Up to this point, my sister and I have been administering his medicines and making sure he eats breakfast and supper. He had someone sit with him during the day and stayed with him at night until he went to sleep. He never wanders and he has a renter in his backyard that helps us keep an eye on him. However, the doctor has said that he is at the point of needing 24 hour care. Deep down we knew this, but wanted to think what we were doing is enough. My sister and I both have young children and do not feel that we can give him the care he needs in our homes. We feel so guilty about putting him in a NH. He has a dog that is currently grieving because Dad is not home and Dad is constantly looking for Brutus, his dog. How difficult is it to find decent in-home care and where do we go to find it?
I am sorry this is so long, but I just want what is best for my Dad. We feel so guilty in all the decisions we make.
Sorry you are in this position. My Mom tried her best to care for my Dad - she didn't want him to be in a home. I was out of state, and was taking as many trips back as I could. Eventually her health took a turn for the worse along with his mental state and he had to be placed. It was the best thing we did for him. At home he was reminded by everything he couldn't deal with, and was very frustrated. Even when they are very bad off, it seems like ALZ patients have a notion of the way things should be. Having his wife and daughter taking on tasks that were outside of the norm (reminding him to shower, helping him shave and dress) were demeaning. He was in his own home, but he wasn't remotely in control of anything and he felt he should be but couldn't express it.
In the NH it was different when a nurselike person was helping him. He also had a lot more to do. At home he couldn't do any of his hobbies or concentrate to watch TV, but it's like his stuff reminded him there was a huge problem. The NH gave him a lot more stimulation, he participated in a few of the activities, but lots of people were coming and going and it gave him something to watch. His frustration level was much less in a controled environment.
There comes a time when you can't see putting your loved one in a home as a failure, you might be doing them a favor. I'm convinced my Dad lived longer in a NH than he would have had we found a way to have kept him home. Let's face it, when we're old we imagine all the things we'd like to do -read, watch movies, hobbies and being in your house is a big part of that -- but it's different for ALZ patients. They need to be in a place where they have a routine, feel safe, can easily be cared for by others and have no stress. That's not always their house.
Good luck - and if you do need to place him, it's OK to feel sad, don't feel guilty.
I am so sorry you are in this dilemma. AD is a terrible disease - but it strikes for reasons we cannot control. Therefore .. NO GUILT! You didn't bring it on him, and you and your sister are only trying to do what is best for him.
He ought not to be living alone, he may suddenly begin to wander away and get hit by a car, or 1000 other scary scenarios. Let the hospital help you find a NH for him where he will be safe, warm, fed, properly medicated (my Mom either forgot her pills or took 3 days' worth at a time, even though I left the exact right amount on the table for her before I left for work) ... she also burnt pots, got lost, threw out good things, collected junk, had hallucinations of meeting departed people and having long conversations with them .. forgot how to get home, was dazed and confused and miserable, dirty, forgot what toilet paper was for, didn't know how to wash herself any more.
Now in a good nursing home, she is clean, dry, feels loved (wonderful nurses and aides!), medicated. safe, and cared for. I cannot imagine how having her at home could have worked out any longer.
It meant a financial loss for he family - but was worth every penny. When her own money was gone, she got into Medicaid with the help of an ElderLawyer, which pays her NH bill now. The home gets her social security check except $50 allowance for her own things like shampoo and so forth.
I urge you to place your dad in an institution suited to care for him 24 hours a day, and do not let anyone accuse you of 'putting him away' as some unknowing people still do. Do not feel guilty - you are only doing what is best for him! None of this is your fault.
Thank you for responding. We are having such a difficult time with our decision. He is being released from the Psyc hospital on Wednesday and we are taking him directly to an assisted living facility. He was depressed today. Today was the first day he has ever said he wished he was dead.
It helps to know others are going through or have been through the same things.
First I want to commend you on doing what you are doing, it is a very hard thing to do even when it is the right thing. It is very normal that he will feel depressed and possibly anxious. It is important that his doctors address this immediately as it will help with the transition. I found when I had to finally do this for my Nana that I tried to create the "look" of her bedroom and den at home and placed labeled pictures in frames of her loved ones as well as her favorite books, music, etc... I eventually moved her to a Christian based, less expensive/fancy, and more attentive assisted living facility closer to me and they agreed to keep her if I would arrange for additional help during the day while I worked, and my son and I would try to eat dinner with her until she declined a greater deal a few nights a week. The more we made it seem like "home" the more it seemed to help. My Nana was diagnosed the week my mother (her only child) was diagnosed with stage 4 cancer. After my mothers death she rapidly declined so in our case it was not unusual for the rapid change. I think much of the guilt we feel is because we cannot let them continue to live a "normal" life. It is not safe for them to continue that way, so please don't feel guilty, feel relief that you are doing what is in his best interest. My Nana was a devout Christian, but as the disease progressed she would often wish for death. That is why I highly encourage you to work with his doctors for anxiety and depression relief. Hang in there!