Taking care of friend with stage 5 Alzheimer's. At my wit's end and want out to live my own life. Any advice?
Her daughters do not take care of her. Been living and caring for a friend for some 10+ yrs. She denies her condition (Alzheimer's). I have no interest in being a caregiver, and her daughters do not take responsibility for her. Have a house of my own, and would like to stay in it, but, if I do, would spend my day going back and forth to her house, 3 miles away.
She has no clue what day/month/year it is, she asks the same questions 50x or more a day, she does not know when to take meds, she cannot take care of any bills or documents, etc., and, cannot live alone.
I do not wish to have power of attorney to take care of her matters. Have talked to her older daughter about the situation several times, but, nothing is ever done about the issue.
What can I do to make sure she is taken care of, and for me to press on and have a life of my own?
I agree with Gladimhere above, give the daughters 2 weeks notice that you will no longer be available to help out. Contact all of the daughters, both by phone and by certified mail, so no communication is lost.
Hope everything works out for the best.
Thank you, all, for your replies!! I sure appreciate having someone to talk to about this issue.
The thought of abandonment never entered my mind, and I appreciate your bringing it up, gladimhere. What I wish to do is exit, but, knowing she is being taken care of. Also, as far as Adult Protective Services goes, IMO, the daughters do not seem to be abusing her. If I contact APS, those women will be after me like two mad hornets.
Freqflyer, I do not get paid for being here, on the contrary, I pay for half of the utilities and other miscellaneous stuff. Since you brought it up, decided not to
do so any longer.
Staceyb, this is not a pity party, but, the "job" has truly become unmanageable, as you mention. I have cardiac issues, and in the last 6 years have flat-lined twice. The stress and frustration of taking care of her is basically overwhelming me. She is on my face 24/7, except when I go to bed at night. Even then, there are times when she comes up the steps and wakes me up a couple of times during the night to ask me what day it is, or, whether she fed the cat, or, some other stupid question.
Some background...my friend and I used to work at the same location, and we both lost our husbands. After we both retired she got very sick (not Alz) and begged me to stay with her because she was afraid to be alone. I hesitantly did so, but did not have intentions to stay at her house forever. I took the opportunity to remodel my house, did it all myself, and it took me 3 years. She would help me at my house, and I started noticing certain behaviors that were not right. After doing a lot of checking, and taking her to the Doctor, found out Alzheimer's was the issue.
Relayed the news to the oldest daughter, and after that, they did not want to be around their mother. I provide her daughter every month a status of the situation, but, nothing happens. This past year I asked her to get more involved with her mother, and this was done after talking to the Doctor and the Stage 5 diagnosis. Well, the oldest daughter has come around about 6 or 7 times in the last 10 months, takes her out to lunch or shopping for a couple of hours, and now realizes first hand what is happening. However, no matter how many times I bring up that I cannot continue to do this, and request she make arrangements for her care, still, nothing happens.
Thinking about giving the oldest daughter a deadline date by which I will no longer be here, and asking her to take action to obtain proper care for her mother. I need to give her until 15 October or so, for my own sake. I cannot take care of a move in two weeks, have to pace myself and do things gradually, otherwise will end up in the hospital.
Once again, thank you all for your help. If there are any more considerations you can think of, I certainly welcome them.
I don't think you need to give so much notice that they don't take it seriously; you could say something to the effect that you are no longer able to provide any kind of care and they should make arrangements ASAP, but no later than, say August 31, 2015, or ever earlier if you think you can move by then. State also that you need to know what arrangements they have made by, say 2 weeks before the deadline or you'll reluctantly be forced to involve APS to ensure that your friend receives continued care.
I also wouldn't provide any explanation for terminating your involvement other than you cannot do it anymore. If you explain as you did here, that gives them a chance to attack you verbally, or turn the blame to you. So don't go into the reasons why you need to get out of this situation.
I.d., don't give them a chance to cop out and turn the responsibility back to you, or blame you for anything.
If you give them too much time, they might not take you seriously.
Thanks for all the advice!! My God, why did I not find you before?
Need to look at all the suggestions you gave me, and take appropriate actions.
Hate to admit that, even though I cannot handle this situation any longer, this is all very stressful. Don't give a hoot about the daughters, but, my friend is going to be devastated. She is scared enough about what is happening to her without adding any more to it. Guilt is not something that I suffer from, but, this will be one of the toughest decisions I have made in my life.
Do you folks think I need to get the Doctor involved (we both have the same MD), or the lawyer I normally use?
The Doctor has told me more than once that this situation creates too much stress for me.
Thanks again, everyone. Many, many, thanks.
If you mean the doctor who cautioned you about your own health, no, I don't see why he needs to be involved. I think that would suggest that you're buttressing your position with medical advice, which you don't need to do. Ten years + is enough.
I'm not sure either what role the attorney could play, although I get the impression that you still feel the need to justify your departure. You don't. To do so puts you in a position of explaining and justifying, which might make you seem weak and somewhat ambiguous about leaving.
I've never been in a similar situation, so I obviously can't put myself in your shoes, but keep remembering that you have a life, you've sacrificed for 10 years, and it's time that the daughters step up to the plate and take responsibility, or make some arrangements so their mother is cared for.
Thanks much. What you mention sounds reasonable. Actually, I do not feel the need to justify my departure at all. The kind of work I used to do required having all your guns loaded.:-) Guess old habits die hard.
If it makes you feel better to talk to the dr about what you plan to do go ahead, likely the dr will support your decision and even help you if your friends needs anti-anxiety meds or anything like that for such a huge change in her life. Mother had to be on something when she was in a rehab facility, she got so belligerent and uncooperative. It was nice that her dr was kept up to date and on board with all that was going on. You might need a dr's "referral" to help her move into a facility, that I don't know about. It really is up to the daughters, but obviously they are going to hear about it after the fact. Prepare yourself for some fireworks there--and you have nothing to feel guilty or bad about.
Having a lawyer in your back pocket it nice, I think. I have son who is one and I have had to drop "well, my attorney will get back with you on that" a few times and it works really well. (Blind threat, he's never had to call ANYONE...the mere mention of bringing an attorney in usually shakes people up enough they just choose to cooperate)
Are you the one who will pick the facility? I am assuming the daughters are not going to take you seriously. Again--keep us apprised and keep your chin up. Hopeful thoughts are with you!!
"you're not staying until the end?" and things fell apart: I continued packing and my father wound up in rehab and mother kept firing the 2 awesome caregivers I found who finally left because of her behavior and one day I just said " I can't take it anymore, I'm leaving" and they have to figure things out. If it hadn't been for caring friends who were supportive, I probably would have stayed "til the end" and woke up, much older and wondering what I was supposed to do next.
No other job is 24/7 and even if you take the odd couple of hours for errands or a movie- family resent you for wanting to leave while they go on vacations and live their lives. There is no easy answer because in the long run, nothing is ever fair when families are involved.
http://agingcare.com/questions/tired-of-mom-saying-I-dont-feel-good-183863.htm?cpage=0&post=1&cm=500610&z=1#500610
Don't feel guilty. You've done more than your share. Time for other arrangements.
http://agingcare.com/questions/tired-of-mom-saying-I-dont-feel-good-183863.htm?cpage=0&post=1&cm=500610&z=1#500610
Thanks for all the suggestions, and your personal experiences! It places many thoughts into their proper perspective. I am taking all this in, planning things out, and deciding what to do and when to do it. I must admit, there is a very high level of stress associated with all this that I have to suppress, and, gradually work myself into taking the plunge.
As far as the doctor and the lawyer, will play that by ear. The doctor knows what the current situation is, and I am sure she would help me with anything needed. Also, have some very good friends that I can count on. As far as family goes, I do not have any, so, that is not a concern.
The daughters will have to pick the facility, I have no POA, so, I plan to provide notice and proceed with the exodus. Hopefully they will let me know where she is.
at, or, maybe the daughters will make arrangements for home care. Hard telling.
Your doctor won't be able to help much unless your friend gives consent. A letter from the physician (my doctor scribbled it on a prescription pad memo and it was accepted by the attorney because it had his name, address and license # on it) indicating that your friend should not be making decisions regarding healthcare and finances may be of benefit.
At that point, she can't be talked into signing documents for the daughters that would give them more authority than they should be allowed. Once again, APS will be getting a mental evaluation and certification done and assigning obligations to the daughters as 'next of kin' under Familial Law which will be punishable in the court. This type of abandonment is shameful.
Your poor friend. How stressful to know that her own daughters are acting this way and scared for your future under such vulnerability. How sad. I would hate to put a family member under court guardianship. From the sounds of it; even though you won't be there everyday - you are the type of person that will be visiting her frequently. Hopefully that will help allay her fears. The very best to you.
On the other hand - I laud people like Liesl. It's a piece of humanitarianism that we seldom see.
I agree with what you said about onlookers. I am sure my parent's neighbors are chatting among themselves wondering why I am not doing this or that for my parents.
Like I stopped shoveling my parents driveway once I developed a heart condition, as much as I enjoyed two feet of snow and the challenge, my doctor told me otherwise. Too bad I can wear an auto handicapped placecard around my neck so the neighbor's would understand :P
On the other hand, maybe we are more tolerant of a good friend who we are caring for than for an aging parent. We start out helping because we are friends, plus we have a lot on common and can relive some fun stuff we did.
What an astute observation! I myself have just recently decided to take a break from seeing my mother. I think I might have a touch of SS myself, as I feel SO much guilt in "abandoning" her to my sibs' care. But upon thought--Mother isn't going to notice at all.
Liesl--again, best of luck. I don't know how things are handled where you live (UK?) So, I cannot comment on how it might all go down. Here in the US, the daughters would immediately be called into play by the authorities and they would probably have to step it up, and fast!
Thanks for your thoughts and concerns.
Wow, SamIamW, you have hit on points that are the core of my concerns. Yes, the daughters have been irresponsible, and they have also taken advantage of the situation. Dump mother on someone else, and we will not have to bother with her. IMO, only time can tell the outcome on this one, however, I am not inclined to use APS, since that action may trigger these women to come after me, or even cause me harm. Maybe at a younger age I would have not cared, but, now, they pose a threat.
And, yes, my poor friend. Can you even fathom the amount of stress involved for her as a result of losing her caregiver? Holyshmoly!!
GardenArtist, funny you should mention this. Have a friend that keeps telling me I am being held hostage in a catch 22 situation for which there is no easy, or perhaps, even no possible solution.
My apology for not mentioning your names. The response of all you kind folks has been beyond all my expectations.
All your comments and the different perspectives are greatly appreciated.
As mentioned before, I am taking all this in, copying all the comments in chronological order and giving each some serious thought.
There is so much to consider...
How OLD are the daughters? I have no grasp of their ages from the posting you've done. I am going to laugh if they are in their 50's or 60's (which I'm betting they are)...b/c that's my age group (58) and I wouldn't have the energy to "go after" somebody in any way, shape or form. These two will likely kick up a stink, but in the end, they are either going to have to face the music or get into trouble. How embarrassing to have someone call APS on you b/c you can't take time to get your parent into an ALF? You are being so kind to everyone, your friend, esp., but also by default to these women. I do hope things work out well for you. I think you will get some pushback from the "girls" but hopefully they will step up of their own accord and grow up a little. I'm thinking more and more how lucky my mother has it--she's a pill, but we all take care of her and none of us would ever leave her out to dry. Hang in there and good thoughts for you today!!
Freqflyer - it wasn't easy. I bought a rollater walker so I could carry food trays, laundry,etc on the seat portion. Unfortunately, by the time I could have my hip replacement surgery; there wasn't much bone left in the joint to work with. And the pain. oh god the pain. I chewed Percocet like pez.
Thank you once again!! More issues to consider...
Keep thinking, what if I were the one receiving care, and what if my friend were the one providing me care? What would I want my caregiver to do with me?
She is at one of these stages where she cannot be on her own, but, also, IMO not bad enough to be placed in a nursing home. Assisted Living or Home Care may work, but, that means that her entire income, minus a small stipend, would go to her care. She does own her house, but, selling her house would not get her too far. The housing market is pitiful. In any event, she loses everything she has.
So, to give her some quality of life, it boils down to (1) my taking care of her, (2) her daughters taking care of her, or, placing her somewhere, or, (3) perhaps somehow we can come to a happy medium on her care where all three parties are involved. At this point, the option with probably the least stress for my friend and I would be the last one. Pulling that off is another story, though...