I've been reading Jan's wonderful post "Time for a Decision." Our sons, my sister, my mother, and my closest friend have been encouraging me to make the move to put my husband in a nursing home. While generally a sweet-natured man, he's become aggressively violent with me whenever I try to get him to change his clothes, change his Depends, or help him with any of his personal grooming. My arms are a mass of bruises from his grips and he's pushed me to the floor more times than I can count. I'm not a "clean freak," but he's developing skin conditions because of his refusal to bathe. I wake up every morning (usually having gotten up with him 1-3 times) planning strategies to get him to take his meds. I have some outside help come in, but they are not there at 2 a.m. when I am having a massive cleanup. I'm working fulltime (to pay for everything...would have been retired along with him now if things had gone as we planned.) Thursday when I went to pick him up from the adult daycare, the director sat me down and said..."Joy, it's time." They can manage him there at the center, but she is concerned about my ability to cope with him at this stage. I came home and logged on to this site and read Jan's post. It spoke to me. I called my sons and the nursing home we had selected and started the process. Friday (off school) I gathered papers and started planning what we would take, etc. My head was clear. Today (Saturday) I read about the couple, married 70 years, who died within 15 hours of each other. I came apart and realized that I just cannot do this to him and to us.
Some of you are in as bad or much worse a situation, and you are still doing whatever you can do to keep your spouse at home with you. I feel like I'm in a mixer. Sometimes I think I'm just being selfish and thinking just of myself in this decision. I picture him when we leave him at the facility, confused and lost and abandoned. Then I have a session like I did just half an hour ago where he fights me all the way in changing his soiled Depends before bedtime. He's learning to hate the sight of me, I think. I know that the man who is with me today isn't the man who has loved me for 44 years, but it is still his body and his voice, and I see fragments of him sometimes....and it's killing me.
It's killing me financially, too. I'm stretched now to pay for the day care and home help, and it's less than half of what we'll pay at the nursing home. I'm looking at getting a line of credit on our home equity, using that through the year, and paying it back with the tax refund. (This year medical expenses for those over 65 are just 7.5% of gross adjusted income, and out-of-pocket fees paid to nursing facilities for those with dementia qualify.) I've discussed it with our accountant and think that's the best solution. We are on the back side of "middle class" when it comes to finances, but there's no way we'll qualify for Medicaid, either. (This post is not going the way I intended....I am so boring these days! Can't do anything but fret about our situation. That's why I appreciate being able to whine and rant here.)
So...this discussion is for support for those of us who have decided "it's time." How do we deal with second thoughts? Are they valid? I'd love to hear from those of you who have already crossed this bridge.
Nothing you do or don't do is going to feel right. It's an awful thing to face for all of you. The director at the center has told you it's time. Your sons sound like they understand. You've discussed it with your accountant. He is and is not the man you married and it does feel like it's killing us.
But this is just going to keep getting worse and most settle down after a while and there are professional people who can bathe him and shave him and watch him 24/7.
I'm sorry you face this and am sorry for everyone here going through this or not even having a hope of getting the help a nursing home brings.
Placing our spouse was the worst day and the toughest decision for many of us.
Stay strong. If you don't do it now it's coming. I'm sorry.
Joy, it is good to remember that nothing is set in stone. There are so many supportive people telling you to admit him now, so do it. Give him at least 2-3 months and then reassess. You can always bring him home again; although that usually happens in the late stages. But, goodness, it seems that you have done all you can do and that is still not enough. There will still be plenty for you to do managing things with him placed. It is almost another job, but at least you get to sleep at night.
My husband became much more appreciative of me after he was placed. He couldn't remember who I was at home, but in ALF I am the only person he knows now. I haven't figured that one out! If they want him to cooperate, they say, "Hey, Marche is coming to see you and you know you have to be clean." Or, "Marche said the doctor wants you to take this medicine."
Give it a try and give yourself a break. Good people are worried about you. Your second thoughts are just guilt in overdrive.
Placement won't be easy and will have its own set of problems, but that said, it is humanly impossible to care for some of these patients 24/7 by yourself.
I placed my wife last August when I could no longer care for her without getting into fights. Now someone else deals with the fights. I see her almost every day, generally to help her with meals. She seems happy to see me, and has settled in well to the LTF. Now, instead of having the worries and fights, I can "enjoy" what time we have together. It's very expensive, but worth it for my sanity and our relationship. We will be married 60 years in June, and have dated since I was 14 and she was 15. There are still times I have second thoughts and wonder about bringing her back home, but realize that she is getting better care than I could give and this is helping me maintain some sort of life, while still seeing a lot of her.
I understand. I placed my husband last August and he was still "pretty good". He has declined and now when I go I am even more sure I made the right decision. They adjust and so will you. It will take time and patience and the guilt will start to fade. At least it has for me. There is no right or wrong decision. May I suggest you place him for a month of respite and see where you r at that time. You will at least have some rest and be able to think more clearly. As I have said before we cannot save them but we can safe ourselves. It is a choice.
Please do not second guess yourself or those around you who are telling you that "it is time". We who have placed our spouses understand fully the guilt and hesitation you go through with the final step. We know. We've been there. But from what you are describing, you are going to kill yourself trying to care for him.
It's been 8 1/2 months since I placed Sid, and every day is a struggle to adjust to this new life without him. However, I know I absolutely did the right thing for both of us. By the time I placed him, I was completely physically, mentally, and emotionally spent. I had not another ounce to give. Since he has been in the nursing home (He needed a NH, not an Assisted Living, because of his multiple physical problems), he is physically much better - his every need is taken care of. There is no more whining, crying, and screaming about the pain he was having from his back and knees. He has a full staff of people to help him with getting in and out of bed, dressing, showering. He does not have to do anything for himself, and it shows - he is in far better physical shape and looks much better than when I was trying to do it all myself with only an hour a night of help from an outside aide.
Because he resides in an Alzheimer specific separate unit of the NH, everyone who tends to him - nurses, CNA's, therapists, doctor, activities director - are all trained to deal with Alzheimer patients. Because there are 3 shifts of them, they are rested and have the patience and skills to handle his behaviors. I had learned how to handle them, but I had completely run out of patience. That tends to happen when you're on duty 24/7.
There is also the physical abuse you are experiencing. Whether he does it intentionally or not, you MUST take yourself out of such a dangerous situation. As others have said, it does not have to be permanent. You can always take him home if things don’t work out at the facility. I would not recommend that, and more than likely, once he is placed, you will see how much better it is for both of you, but it is something to keep in mind when you are so hesitant. We are the veterans who have seen and done it all. Please give serious consideration to our advice.
Joy, Sometimes we do let our hearts overrule our brain. If the day care director, your sons, sister and mother think its time I'm sure they have your best interests at heart. The couple you read about were 91 and 92years of age. You still have a lot of living to do. I agree with what others have said about giving placement a temporary try. The only thing that is not reversible in our situations is the progression of the cruel disease. You can always bring him home if after an adjustment period you still feel like you can be his caregiver. I wish you peace in making your decision. 3 years after my DH's placement I still occasionally feel like I gave up to soon but overall I feel like it was best for both of us. A big (((hug))) as you do make your decision. Good luck, Joy. We understand.
I came here to read any follow-ups to the message I posted last night after a hard day with my husband. Your words, your suggestions, your assurances are taken to heart. I had been looking at this transition to a memory care unit as The End, but I see that it is just another twist in our journey. Thanks for taking the time to write your common-sense responses. It puts things into perspective for me.