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PlEASE HELP ME with this UNUSUAL (I think) situation as a caretaker
Posted: Friday, January 4, 2019 1:28 PM
Joined: 1/3/2019
Posts: 3

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.  

He 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.  

Please 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. 

His life 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.

D in law
Posted: Friday, January 4, 2019 2:16 PM
Joined: 4/24/2017
Posts: 523

Oh boy, that is soooo young, and I'm sorry.  While I can understand and respect you and other family members taking part of his caregiving, the sooner a more permanent living arrangement can be made, the better off for everyone.  All this moving around is not good for him.  It's very confusing.  It maybe Ok now, but eventually his behavior will change.  Which brings me to your inquiry.  I believe you are absolutely right in not getting intimate with your X.  He is your X for a reason.  It's wonderful that you want him to feel cared for and loved, but I would advise to keep in separate rooms until another living arrangement can be made.  It will only get harder for you, so I think that's the best route.  I hope some assistance will get approved, keep on that, keep applying and bugging the heck out of whoever will listen and hopefully get him some help.  It's only $7.  Surely somebody can make an exception to the rule, or find a way around.
Jo C.
Posted: Saturday, January 5, 2019 9:09 AM
Joined: 12/9/2011
Posts: 9702

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.



Posted: Saturday, January 5, 2019 10:32 AM
Joined: 3/6/2017
Posts: 1457

I am so sorry you have a need to be here. This is an unusual situation, although there are a number of folks who have passed through here caring for a former spouse for a time. 

The need to be with you is likely "shadowing" which is quite common in the mid-stages. The affection he's demonstrating for you could be related to a kind of "time travel" where the PWD isn't oriented time- my own dad, whose very long term memories held on for quite some time, got stuck in the mid 1970s which were a very happy time for him. He talked about the people with whom he taught, his students, fretted about my sister and I coming home on time (my sister died 25 years ago and I'm 61) and calling his long passed parents. 

Posted: Monday, January 7, 2019 8:34 AM
Joined: 1/3/2019
Posts: 3

D-In law

Thank 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 or awful.

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.. 

Stephanie Z
Posted: Wednesday, January 9, 2019 5:12 PM
Joined: 12/15/2011
Posts: 4208

Hi Kathy,

     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,

Stephanie Z

King Boo
Posted: Friday, January 11, 2019 11:49 AM
Joined: 1/9/2012
Posts: 2965

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.

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