My husband is in Stage 5 of EOA. I work fulltime. I have kept him home since he retired two years ago. He goes to daycare each day, Monday through Friday. He cannot be left alone. We seemed to have entered a new stage of life. He was recently pulled from a research study because of the progression of his Alzheimers. I find myself taking care of a baby in a man's body. He's become totally incontinent. He cannot follow simple directions and is often confused even in our home which we have lived in for a number of years. I'm going to put him in respite care this weekend. I don't know at what point it becomes permanent care. He still recognizes and knows who I am and I suppose I feel guilty in putting him away from home because of this. I find my evenings and weekends are spent cleaning up after him, feeding him (he becomes very impatient if he has to wait; his appetite is voracious!), washing clothes at least nightly, waking up three and four times a night to make sure he's okay. My life is work and coming home and taking care of him. I'm becoming resentful because I have grandchildren and children that I would long to see but they do not live nearby and I cannot travel under the current circumstances. This upcoming respite care is the first time I've had someone else care for him overnight. I know I sound whiney but I just don't know when the time is to make that huge decision of permanent care outside the home. Any advice would be appreciated.
Sounds more like a 6 than a 5 to me. I have not come close to the point of considering that option yet, but I can completely imagine a point where I could no longer maintain a decent life attitude while providing the level of care required. Let's hear from those who've been there...
I think you know the answer already. If you are asking it is time. I have been where you are...almost the same situation except that I was no longer working since I had quit my job to care for him...but I sent him to daycare everyday just so I could breathe. I was exhausted, burnt out, mad, resentful and on the fast track to becoming ill myself. I am glad to read that you are availing yourself of some respite this weekend. Just let yourself be okay with doing that......Remember, you didn't cause his illness and you can't fix it. What you can do is maintain your own quality of life. You are important, too.....Big hugs......
I guess the question to answer is how much of yourself are you willing to sacrfice for the care of your loved one. I think many of us would be willing to give our own life if we could have our loved one back. That is not possible then how much are we willing to give up knowing that when the journey is over we still have to move on with our life minus our mate. It is possible to come out of this thing in financial ruin. I think we do our best and yet we have to hold back knowing that we have to have some of ourself left when this is over. I guess it might be easy to guilt yourself in giving more of yourself than you can afford. We are all different and all have different ability and limits that we have to live with. This is one question that you will have to answer for yourself and what is the right time for you in your situation is going to be different for each of us. Good Luck on your decision
Thanks for the words of wisdom. What I didn't mention is that I have to work for the insurance and daycare costs. I also was widowed at the age of 47 due to renal failure in my first husband who had diabetes. I'm afraid to quit work because of the financial hardships. You're so right moorsb when you talk about what we are willing to sacrifice. Perhaps after a week in respite care I will be able to make a better decision. It is so hard though when you are filled with guilt about whether you have done enough. I felt with my first husband that I had done everything possible to make sure I had exhausted every bit of care medically and emotionally for him. I was at peace when he left this earth. In this situation, you all know the situation can be exhausting. It seems like we make four steps forward and then we go back five. I hate this disease!!!!
I too have been where you are and it does sound like he moved into stage 6. I was working full time and taking care of my husband. I ended up taking a leave of absense for 3 months and he was just progessing so fast. I decided to place him and as I look back on it now, I should of placed him earlier. It isn't only him that you need to be concerned with, you also need to be concerned with your health. You are the only one who can make that decision for you. Please make sure you consider yourself in the decision as well.
arizonasun--you have only 3 things to decide. 1. Are you doing the best you can to provide and lookout for your DH? If yes, it's enough. 2. Are you taking care of yourself, physically, emotionally, spiritually, and financially, so you can take care of him and yourself? and 3. Knowing this is a terminal disease, and his condition will only continue to deteriorate, what is the best way for you to continue doing Numbers 1 and 2?
My guess is also that your DH is in stage 6, as well. Placing him is not quiting on him, nor is it a failure in caring for him. It is enlisting 3 shifts of trained caregivers to do what is needed. You still are in charge of his care, but when you visit him you can enjoy him at the level he is. You won't be burnt out, buried under all you still have to do. Just my HO.
This decision reminds me of the speech we all get before taking off in an airplane. They want to make sure that when there is a crisis, and the oxygen masks deploy, that we FIRST put on our OWN mask, and then assist any children. Why? Because if we are not breathing, we can’t possibly assist the children.
The guilt associated with this decision comes from imagining another world. If only I did not have to work… If only I had more savings… If only we had purchased long term care insurance… If only…he wasn’t devastated by this dreadful disease! In that world you wouldn’t have to place your loved one. But that world doesn’t exist, and we have to cope with the real world in which we live. Placing a loved one where they can get the care they need, and you can get the rest you need to survive and continue caring, is a loving gesture.
I was in your position at this time last year. The only difference was that I was not waking several times a night to check that he was all right. I was up most of the night because he did not sleep and roamed the house and often fell down. I found that not only was I exhausted and angry and not taking of myself, he was not getting the kind care He needed. I couldn't keep him from falling, could not get him up without help and could not get him into and out of the shower by myself. The meals I cooked were haphazard at best and down right unhealthy at worst because I was too tired and did not have enough time to do it properly, and worst of all, I lost me temper and yelled at him way too much. I placed him almost a year ago and he is doing well and our time together is filled with love and caring instead of anger and resentment on my part. It was the hardest decision I ever had to make and it took me a while to get there, but I now know that it was the right decision. You need to do what is right for YOU and for HIM. Good luck
I placed my husband in mid January. Yes, I felt very guilty doing it but I go to see him every other day. (I'm still working part-time) He still knows me . It was the best thing for both of us. Now we can sit and hold hands . We can tell each other how much we love them. When he was home it got to the point where there was very little love shown due to all the stress. Sure, I still miss him a lot but than I remind myself of all the reasons I had to do it.
Arizonasun,please don't think you're whing,I think we all run scared with this horrrible disease. And don't feel down if you have to place your LO in a facility,that's why there are nursing facilities.My husband and I decided a few years ago that if either one of us got too hard to care for we would want to go into a facility. I've put many volunteer hours at a local nursing home and found most of the residents are very happy once they adjust. The first few weeks may be hard but after that they are at ease.It becomes their home.We would bring my MIL to our home on occasion and after an hour or so she would say she wanted to go home(the nursing home).There is no reason for ANYONE to feel guilty for placing their LO.The thing is to visit often as Caroly does. Good luck in your decision.
arizonasun--Have you thought of hiring an aide for some help on the weekends/evenings? If you are not sure it's time for placement, maybe that would be an interim step that would allow you more help in the short term while you get your head wrapped around placement for the long term. On the financial side, it seems to me that daycare plus an aide may still be less than what a residential facility would cost. Just another alternative to think about.