I found this website after many months of searching for support. I have been with my significant other Bob for 20 years snf encouraged him to move in with me 3 years ago when he lost his job and sold his house. He seemed depressed and confused and I wanted to help him temporarily until he got back on track. Well, he was diagnosed soon afterward that he had Alzheimers disease, early onset. Bob is 67 now and I am 58. I am helping him now like a mother helps a child and reading Joan's blog was extremely helpful. 20 years is a long time to love someone and although we never married and lived seperately for most of the time, it was because we both had family reponsibilities. Bob has 3 grown children and I have asked them to make a long term plan. My question is.... when will he be able to emotionally handle separating from me? I don't want to hurt him but it has gotten to the point where I rush home from work to feed him dinner and check on him. I have a very demanding job which requires nightime events and meetings and feel too overwhelmed at this point to face the fall season when events are so prevelant. I don't want to hurt him. I pray for him not to know me so that I don't have to feel this guilt. Can anyone help me?
You are his comfort zone and security, so there will not be a time until he no longer knows you. And even then he may see you as his security. You will have to make the decision when he is no longer safe to be left at home, which sounds like it might be getting close. So question is not as much as when he will emotionally but when is it safe not to leave him alone?
For what it's worth - and I haven't been in your position so this is just my opinion and not my experience - I would want his own family to be responsible for him and provide for his daily care and supervision. I would want to continue being his friend and phone him and visit him, but no more than that. You would find that you have no legal right to make major decisions regarding his care, or his affairs, and no legal rights as a wife. You do need, and have the right, to protect and care for yourself, which means you've got to meet the demands of your job, first and foremost. Who is going to take care of you if you don't? As for guilt, undeservedly many of us feel guilt even when we are knocking ourselves out to care for them. There is a saying, and someone will be along to correct me on this because I only remember part of: We didn't cause the Alzheimers. I believe it would be easier to live with guilt than find yourself burnt-out, ignored by his family and have your job threatened because you're not performing.
I don't think there will be a good time. I agree with Mary75.
Also, the earlier he moves the easier it will be for him to adjust to the change.
If you are paying his expenses, especially his medical expenses you could be put on the hook for future medical expenses and even Medicaid might insist that you spend down before they would pay for a nursing home.
So you need to push his sons to be active in his care and state that you are no longer able to have him live with you and say what you will be able to do for him.
Francesrose, so sorry you are going through this... I agree with what everyone has said so far, and would add one more bit of advice: Seek the advice of an eldercare attorney. Hope all goes well...stay in touch!
Fancesrose, Thinking about this, you need to be very careful how you move forward. You want to do what is best for you and your friend. And protect yourself in the process. If you took care of him, not being his wife in the end you could end up with nothing and no way to care for yourself. And if you leave him now it could look like you are abandoning him. And most of us have found when the dx of AD comes along, a lot of family just drop out of sight. It may be that the children feel you are doing the care and that is the way they want it. I agree with bella* you need to seek an eldercare attorney to make sure you have your self protected.
If he lost his job and sold his house does he have any money to provide for himself? How would he afford care? All things that need looking into.
As for the best time, never comes. Even though DH did not know who I was. He knew I was important to his care.
Hi francesrose, No one can answer your question about when Bob will be emotionally able to handle separating from you. The answer might be "Now," "Later," or Never." Everyone is different. Some people (like my husband) are able to transfer their dependence from their SO/spouse to the staff at a LTC facility without any problem. Others have a lot of problems. (See the thread at/near the top of the Discussions page called "Spouse in LTC . . . ")
The point is that you and his children cannot wait until the stars are aligned before you place him. If you can no longer take care of him, he needs someone else to do that. If you have not yet met with an elder law attorney, you should do that ASAP, since your legal and financial situation is complicated by the fact you are not married. BTW, if he has some money and you have access to it, you may want to sent him to adult day care a few days a week while you and his children are figuring out the placement issue. A full work day is a long time for him to be alone unsupervised.
As far as guilt goes, it seems to be part of the territory. But it should not be the benchmark for putting him in care. (That's easy for me to say, since I have not experienced guilt. But I was administered such a huge dose of it during my religious upbringing that it probably immunized me for life. Kind of like having the measles as a child . . .)
<<< I have been with my significant other Bob for 20 years snf encouraged him to move in with me 3 years ago when he lost his job and sold his house. He seemed depressed and confused and I wanted to help him temporarily until he got back on track.>>>
What's snf? You wanted to help him temporarily....seems to say that it's time for his children to take over. Set an actual date ie end of October.
I agree with Mary....My hubby is 79 and I'm 56 and we have gone through his retirement fund looking after him but not mine and I won't allow it because I am the one that is going to take care of me when I retire.
This is a very difficult journey even when its a spouse. Much less our live in partner. I agree with mary75. That his kids should take over his care and you be his friend and nurturer but leave legalities of caregiving to his kids early on. Its never easy or a good time. My best divvi
I can't add much other than to endorse what has already been said by others.You have been very generous to take your friend in for the past 3 years when his life was starting to turn inside out and up side down.
The truth is, you may love this man and care deeply for and about him but you are not his wife. You will not be considered his next of kin I shouldn't think unless he has made some stipulation somewhere legally speaking.
What some of us have found is that when one begins to shoulder the task of care giving one with this illness, many others drop out..kids don't come around around to help or maybe one does so the other feel they don't have to, sometimes our own family or our spouse's family don't come around at all...or they are too free with advice yet never even offer to look out for them for a week so we can have time off.
You are already beginning to feel the effects of fatigue and we can all attest here that it will be getting worse as time goes on. And you already have obligations to your work. You owe it to yourself to contact an elder care attorney who can give you some insight into what services with medical or VA would be availabe and how to protect funds. Aside from that his own children should be stepping in and carrying the responsibility. You might even ask the attorney how you might be reimbursed from his estate for the expenses you have already invested in his care...it might not be possible later. You have a full plate of information you need to get and devour to protect yourself..and in your unusual circumstances you owe it to you and your family to take care of you first.
Keep us posted on how you are. This is a terrible disease and every one involved suffers.
Blessings for what you have already so generously done for another.