Son in denial

Damiross · August 10

My wife's son knows his mother has dementia. I tried to talk to him about what happens if I, the sole caregiver, cannot provide for her. He says not to worry, she'll go first.

He doesn't understand that it is just me passing away that could cause her to need a new caregiver. I could become incapacitated and not be able to help. I could fall and break a leg or be hospitalized for something.

Her social worker would like to set up a phone meeting to discuss this. Before I approach the son again, I'd like to get some talking points I could give to the son so he recognizes the seriousness of this.

The son lives about an hour away. For all practical purposes, he is the only family she has.

BPS · August 10

While my wife was still home I had written down all her medications and limitations and that she could not stay home alone (I would verbally tell them about major changes but I only wrote them on the copy I kept. I also had a plan B of AL and later MC. I had already been in contact with them and got on a list first at AL and later at MC (on their list if I wasn't ready they just moved on to the next person and we stayed on top of the list). I gave it to each of my kids and kept a copy with our other papers. I really didn't discuss it much, maybe I should have, but if the situation arose there really wasn't any option and I gave them everything I could think of so they would know what had to be done. They too believed that she would go first but I wasn't as sure. Thankfully my belief they would step up wasn't tested.

JJ401 · August 10

I too worry about what if something happens to me.

DH here has one daughter who absolutely should not be his caregiver and one who is capable. I’ve informed the capable one of his diagnosis and I let her know each time he has a doctor appointment. I’ve had DH put beneficiaries on accounts, draw up a will and powers of attorney (non springing). I’ve put together a binder of everything I can think of (accounts, utilities, doctors, funeral plans, etc).

Problem is that I can’t get daughter to look at the binder. I want to sit down with her so she can ask questions. At this point I’ve resigned myself to thinking that I hope the binder is sufficient. If there is a way to breakthrough the denial of what could happen, I’d be thrilled to hear it.

SDianeL · August 10

I was advised by this group and my daughter-in-law who is a nurse to get my DH on a waiting list for MC. I guess I was in denial or thought I had time. I had planned on caring for him at home. In Dec 2023 I was diagnosed with rare aggressive cancer with a 50% survival rate in 5 yrs. I had to start chemo immediately & after chemo had to have major surgery. At my age, I knew I would not be able to care for him any longer. He had one daughter who is disabled and lived out of state. I had no choice but to place him in memory care immediately. It took weeks to narrow facilities and tour 3. The intake process also takes time. During chemo I got so weak I could hardly walk across the floor and had to stop chemo a few weeks early. You never know what will happen. Feel free to share my story with the son. Meanwhile, I would make the plans and send them in writing to her son. If he’s in denial he probably won’t be much help anyway.

H1235 · August 10

In my experience some people just refuse to face difficult situations. You know how we say here you should never try to reason with a person with dementia. Well I have taken that some approach with my brother. It was so frustrating and stressful trying to get through to him. I don’t try anymore. You can only do so much. Give it a try, but if you can’t get through to him don’t beat yourself up and stress about it. I think jj401 has a great idea with the binder. Do everything you can and organize it in a neat binder and if he is not ready to deal with it now, it will be there for him if he needs it. Is he secondary on her DPOA? Seems like he should be. Maybe a legal document would open his eyes. I think I read that you can notify local police so that if something were to happen to you they would know your wife has dementia and needs care. I hope you can get through to him.

harshedbuzz · August 10

@Damiross

It's hard to be a planner surrounded by those who would fly by the seat of their pants.

Is he otherwise a decent person? Does her son visit regularly? Does he interact appropriately when he is there? Are their lifestyle factors that would impede his ability to step in if needed?

There may be options besides the son. Does your wife have a dear friend or sibling who could execute a transfer to a SNF/MCF of your choosing in the event you can't provide care temporarily? I have a friend who is a paralegal whose boss acts as guardian for a number of single/childless elders; she does this kind of thing on his behalf occasionally. She even does well checks and supervises their estate sales as part of their package.

That said, if the son is a reasonably intelligent man and a good enough son, he'll likely rise to the occasion if needed if you pass. He may make different choices than you would— a facility near his home rather than care in her home for instance but it will likely be fine.

A temporary situation like a hospitalization is trickier. For a planned procedure, hiring help in for both of you is one option. You could also arrange a temporary respite state to allow you to get back on your feet before deciding on next steps. An emergency situation would be trickier, and this is where a friend might be useful to execute your Plan B until the son can be looped in.

As for a talking point— 1/3 of caregivers die before their caregivers.

HB

???? · August 10

My wife's Neurologist recommended a Dementia Care Navigator to help us come up with a plan if something happens to me before for my wife. So I called her up, set up an appointment in our home with here. Our daughter took time off work to attend and we came up with a plan. She also recommended three care facilities nearby which my wife and I toured. Both have assisted living and memory care. Right now, my wife cannot live independently at home, but could live in assisted living for a while, then on to memory care. So we have set up a plan. What I have learned from the Alzheimer's Association is that 60% of the spouse-caregivers pass away before the ALZ patient. And once the spouse reaches the age of 70 it goes up to 70% of the spouse die before their love one. I recommend everyone comes up with a plan. Good luck.

Timmyd · August 10

"recognizes the seriousness of this"

Do take the time and make the effort to determine the extent to which her son is capable of doing what needs to be done. However remember this expression:

"Don't go to the hardware store for milk"

You may reach the conclusion that he is not capable of doing what would be expected of him. That is ok. It is better to recognize this and move on than to spend more time wandering the aisles of the hardware store looking for the milk.

harshedbuzz · August 10

@Timmyd

"Don't go to the hardware store for milk"

Brilliant.

Jazzma · August 10

If he is responsible, you might want to set up a joint account for you and him so he can access funds if needed. I did that with both of my kids, and I think it helped them realize that they needed to step up right away if something happened to me. The local Fire Department also has a community page where I entered information about DH and next of kin, and noted that he could not be left alone. It's a real possibility that you son will have to step up at some point, if only because he IS next of kin. Otherwise DH could wind up in the hospital pending placement, and that's not good for anyone. Wishing you the best.

CindyBum · August 10

My DW involved a social worker with her two sisters while they were caring for their parents with dementia. My DW is a retired social worker, but the sisters just couldn't hear it from her. She talked to the social worker in advance and then let the social worker take more of the lead. It worked quite well.

CassLoftis · August 14

https://alzconnected.org/discussion/73726/son-in-denial

This is so hard. My DH's son was in denial to the point of making fun of his dad. He was downright cruel. Needless to say, we have severed ties. It is sad, but Caring for my DH is enough without having to educate and encourage a grown ass man on caring for his own dad.

Yes, this means I have very little help. The reality is I didn't have help before either and it was just painful seeing my husband be hurt by his son.

Damiross · 2:41AM

He doesn't visit regularly. While he is a good person, I would not trust him with being responsible with any money left to my wife.

My wife medical needs are taken care of by PACE ( Program of All-Inclusive Care), a Medicare program. While for the most part, it is a good program, the center she goes has the policy of keeping elders at home. They don't use memory care or nursing home facilities.

SDianeL · 3:17AM

have you thought about talking with an elder care attorney? Perhaps a will with your wishes known and naming someone as guardian. I wouldn’t trust the son to care for her. I think I would stipulate a memory care facility.

Son in denial

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