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PlEASE HELP ME with this UNUSUAL (I think) situation as a caretaker
My x-husband was diagnosed two years ago at the age of
55. There are so many issues going on at
once so I apologies in advanced for this long inquiry.
It was and still has been a very long
complicated process before we were able to reach his diagnoses from Tufts
Medical on Boston. Currently the
majority of his siblings will not provide support, do not believe he has early
on-set Alzheimer’s and are extremely angry from the amount of money that was
provided to him prior to his diagnoses.
was married a second time over 20 years ago and has three girls with his 2nd
wife and one daughter with me. His
youngest child is only 13 and he still must provide child support for the 13
year old, which is deducted from his disability check. The financial situation is a very long story
so I must skip over it to get to the point of my inquiry.
He was fired from several jobs because he was
unable to perform. He is also not
qualified for a State/Federal program called PACE which would have provided financial
support for assistant living. He is
$7.00 over the requirement... YES SEVEN dollars, so he cannot received the financial
assistance of $14,00.00 a month to help pay for his living costs that would be
over $3000.00 a mouth. With that said
our daughter, now 30 years old, had to urgently find him a room to live in because
he had reached a point where he was homeless and living in his car?
His disability took months before he received
support, but still is not enough for assistant living. The room that he rents
is a complete hell hole and is a distance from me, my family and his only
sister that will help him. We also took
his car away and have since been taking turns having him stay with me,
my sister, his sister, and occasionally with my brother. His 2nd wife is now on board to help
and will let him stay there as well. We dont want him sitting in this hell hole all day with no interaction. So,
here is my issue:
When he stays with me I am now dealing with him wanting to
have me near him constantly. This
includes sitting on the couch and holding his hand while watching TV (not a
problem, I’m glad to) to sleeping next to him in my bed, rather than his own, and
yes there has been the attempt for intimacy on his part. I have explained that it would not be a good
idea and confusing for the both of us. He is NEVER forceful or rude or threatening but
continues to be very, very affectionate, always wanting to hug me and kiss my face and hands. And again, NOT in an offensive way at
all!! Since he has been medicated he is
very calm, very sweet and non-confrontational.
He is very similar to when we dated and were first married. We began dating at 19 years old, married at
23 for 5 years, had our daughter in our fifth year of marriage and divorced a
year later from simply maturing and growing differently.
He DOES have the ability to recall from past events but his sentence structure is fragmented and his ability to remember the names of common
items and people he does not often see is now gone. It's heart wrenching beyond words. I feel as though I’m am constantly going into
another room to wipe my tears so he won’t know I’m crying.
Please tell me, is this need for him to have me near him
part of the disease or is it for only one other reason that is unrelated. He always asks where he is going next but
wants to now know how many more days until he can come back again to be with me. Sometimes at night when he is in his bed he’ll
ask from his room if he can just lay next to me and/or hold me. The guilt of me saying no is so overwhelming,
yet at the same time I just can NOT be intimate with him to any extent. I can’t and won’t go there because it will emotionally
cripple me and I don’t think it’s appropriate. I struggle with an anxiety disorder all ready
and I am a full blown empath! I never push him away but rather change the subject or surroundings.
help me manage this with what information you know. Yes I am planning to see a therapist but my
main concern is I NEVER, EVER want him to feel afraid, or lonely or unloved, yet
I don’t want him to read my care and love for him in the wrong way.
has completely changed at such a young age.
My daughter insists this is not her issue and that it is inappropriate
for me to discuss this with her. I don’t
agree but I need to respect her boundaries. She has been wonderful with her dad but it’s
been a lot for her. She is a full time
CPA with a stressful job. She only
remained married for 8 months, since her husband would not support her in
taking care of her father, so she is also going through the process of a
divorce. Her father was diagnosed 6 months
before her wedding, it just didn’t start or end well.
Sorry this is so long and thank you for any
advice or help.
You do not mention the state you are in and it is not in your Profile, so I can only give general information. If your ex requires an alternative care living setting but has too much income to obtain benefits; (Medicaid or Medi-Cal if you are in California). BUT if he does not qualify because he has just a bit too much income, but not enough to pay for a facility; many states have what is called a, "Qualifying Income Trust," or in some states, a "Miller Trust" that can solve that problem. So many are not aware of this and most often this is not mentioned by those entities that are helping families.
In a state that has a Miller or Qualifying IncomeTrust, his income would be automatically deposited into the Trust each month. When the care facility bills; each month his income is paid to the facility out of the Trust and Medicaid makes up the shortfall. It is well worth doing a bit of research to find out if your state has such assistance. Of course, the facility would have to have a contract with Medicaid or Medi-Cal.
you for your support and advice. I just don’t want him to ever feel alone or
afraid yet I’m concerned that my comfort and care for him will not only leave
me vulnerable but also misunderstood by him. And YES I need to protect myself
to stay mentally healthy to help care for him.
Unfortunately or fortunately our divorce was because we were married
young and grew differently. Nothing vicious
The PACE program eligibility is
based on his social security disability so under NO circumstance will they
change the amount he receives since its based on his prior income.
I also realize moving him around
is not a good thing however now that he does not have a car we don’t want him
sitting alone in an apartment that is a hell hole located in a desolate area.
Thank you again for your feedback I truly appreciate it..
I cannot give you much advice, but I would recommend you call the Alzheimer's Association Hot line if you have not already done so. The number is 1 800 -272- 3900 Ask for a care counselor. This service is free.
Hoping this helps,
It seems to me that there is still a lot of leeway to help the situation without actually having your ex in the household. It's not good for him or you or your daughter, especially as you are attributing the end of her marriage due to care demands. This is a tragedy.
Also, since your daughter actually did the work to find him a room, presumably she did the best that she could, perhaps try and avoid calling it a hell hole to her face.
There seem to be an awful lot of technically non-legally responsible individuals involved in her care, your whole side of the family, all of you are ex's - - -since his wife is now back in the picture, she should be the one to be with him in bed sleeping. If you feel like you need to help, do respite for him, in their house - or help with childcare of the 13 year old daughter instead, do meals, find community resources. An adult day program would help everyone. Boundaries are going to be a good thing in this situation. Emotional people are frequently taken advantage of, and the more care you do, the more his wife is enabled not to do.
As to not wanting him to ever be upset or lonely - no one can promise that. It is a disease of brain deterioration and some manifestations of the disease cause this. Don't set yourself up for responsibility for something that may not be possible.
And yes, your daughter is correct that she shouldn't be getting an earful about her parent's relationship, it's the land of very weird for her and not appropriate. It's good a therapist is on your list of things to do, it will help you a lot to sort through your feelings and why you are so deeply entrenched in his care as an ex wife. Lots of ex wifes are on the discussion board from time. . . perhaps a search will yield a helpful post for you.
Being emotional does not mean you have to meet everyone's needs.