Confronting Denial

ajoec

My Dad has FTD with limited mobility. My Mom is his primary caregiver, but she is still in denial and hasn't fully accepted the diagnosis and the situation. She is holding onto how she wants or envisioned things would be in their retirement years rather than adapting and trying to make the best of a very difficult reality. She will not make changes to how she does things to help both of them out. She will not seek out or accept help easily.

For example, she will not help him get out of bed and ready for the day in a timely manner so my Dad sleeps late and isn't up and ready for the day until 11 or noon. He eats breakfast at lunch time, which he has to make for himself. My Mom just complains that he sleeps the day away and she is stuck at home all morning wasting her day too. She does leave him alone sometimes while he is sleeping and justifies it by the fact that he is just in bed anyway. I don't know how to get her to be willing to adjust and help him in the morning so that they are both happier and he can get on a more normal schedule.

My Dad is generally happy and agreeable in the mornings, but as the day progresses he gets more confused. In the evenings, he is convinced that my Mom is actually his Mom. He calls her mom and asks where my Mom (his wife) has gone. He gets worried about where she is and if she will make it home safely most nights. He sometimes wants to go outside and look for her. More recently, he has become convinced that my Mom is out cheating on him. All of this gets my Mom extremely upset and she struggles to redirect him and get him to stay inside and go to bed at night without waiting up. I have tried to help her with redirecting him, but she gets upset with the cheating accusation and can't get past it. She knows it is the disease, but she still can't see past it and just denies and argues with him. Again, I think this comes back to not accepting the hard reality of this disease.

There are other examples. I have tried recommending books to my Mom to read (she likes to read) that I think could help her, but she doesn't read them. My sisters have tried to get her to counseling and to take advantage of places like this forum and help lines. She finally agreed to talk to a therapist once a week (progress!), but on a daily basis there are no changes and just the same problems to get upset by.

That's a lot to ask — does anyone have any advice on how to get my Mom to accept the situation, start making changes, accept help, and try to make the best of everything?

SusanB-dil

Hello and welcome to 'here', but sorry for the reason.

I can understand that mom doesn't want to see 'this' as the reality. But also agree that yes, of course she really needs to. Since I have no doubt you've told her that this situation will only get worse, have you really asked her 'why' or 'how' she isn't seeing that evenings will tell her this is getting bad?

It isn't too much for you to ask, but if mom is in total denial, I'm not sure anything short of a 'shoe to drop' will change her mind. I'm glad she has you and sisters to see what is going on and to help her.

Sorry this isn't really much help. But I'm glad you found us. and yes, we understand.

H1235

Welcome. Sorry you need to be here. It sounds like your mom is putting him in unsafe situations. How long has this been going on? It’s understandable that it is hard to accept, but if this has been going on a while then it’s probably time for a new approach with her. My brother had his head planted firmly in the sand. I insisted he attend a doctors appointment where I asked very specific questions regarding safety. This helped some. Lack of empathy is a common dementia symptom. Have you noticed any other behaviors that might be concerning (poor decision making, problems with bills, confusion, trouble finding words). Dementia is about so much more than a bad memory. Is there any chance she is showing signs of dementia? Are legal documents in place? If she is not able to care for him, could she be talked into bringing him to a facility? I know this is not ideal, but it might be better for him. I will attach a few resources.

DBAT.pdf

understanding-the-dementia-experience.pdf

https://health.clevelandclinic.org/dealing-with-anticipatory-grief

ajoec

https://alzconnected.org/discussion/comment/280513#Comment_280513

Thanks for the response. She logically knows that things will only get worse from here on out and when we talk she seems like she is on board with changing something or trying something out, but there is no follow through. I really think that if she would make a few small changes and concessions their quality of life together could be greatly improved. My siblings and I are going to sit down with her again soon for another blunt, honest conversation to try to head off the "shoe drop" moment.

ajoec

https://alzconnected.org/discussion/comment/280516#Comment_280516

Thanks for the response and resources. Luckily, she isn't really showing any signs of decline, so that is good. She is constantly stressed out and overwhelmed, but is generally doing well in other aspects of life - so that is good. I have taken on managing their finances - retirement accounts, monthly budget, taxes, etc. - to try to ease the burden and all legal documents are in order now. I do think that she is capable of caring for him at home right now, but we just need a few changes to happen.

Victoriaredux

It's a hard situation for a spouse to absorb , the other person is half of you, if it was a good partnership and facing their decline is facing your own . You know those old movies where people talk to their ancestors' oil paintings on the wall? In a weird way having a LO w/ Alz is like that- they are here, but not. You expect and hope for a normal response but they aren't there as they were.

So she's facing the mental and physical stresses of caregiving and mourning the loss of her spouse as he was.

Maybe have a case manager that you and your siblings vet personality wise ahead of time for a good fit with your Mom can visit with your folks. Perhaps watching how that person interacts with your Dad will help her learn tools on how to adjust for a better situation.

JulietteBee

I am so sorry you find yourself in such a difficult situation.

If you are aware of Dr. Elizabeth Kuebler-Ross, you wil know of her clear delineation of the 5 stages of grief. The stages do not have to follow one after the other and be done. A person may get stuck in a stage or after apparently reaching the fifth stage of "Acceptance," suddenly finding themselves back at "Denial."

Your mom is in the "Denial" stage, and for now, it is her chosen coping skill. Do not try to push her through the stages any faster than she is emotionally able to handle. You could end up causing her to become stuck in a protracted state of grief, even beyond his death. Allow her to come to terms with her husband's diagnosis in HER time…ijs. Hugs!🫂

notequipped

My first thought is that your Mom may be experiencing cognitive decline of her own. Before my Dad passed, my Mom was unable to understand that Dad not doing certain things was because he couldn’t rather than because he didn’t want to. No matter how many times I discussed it with her. She really and truly didn’t get it. It is worth having her checked as well. The other thing that you mentioned is being resistant to change. Sounds much like my Mom. I hope that is not the case but definitely worth further consideration.

ARIL

This is tough. So much of your story reminds me of the situation a few years ago with my dad who clearly had early-stage dementia and my stepmom, who was also experiencing cognitive decline, but of a different kind that was hard for most others to see. Getting up at 11, making his own meals, her litany of complaints, her inability to accept that he had changed, etc. all sound very familiar. My stepmom was also demanding that my dad perform physical tasks far beyond what was safe or what he was capable of, including felling trees. He didn’t do that, and she berated him for “laziness.”

For us, an important first step was getting a hired aide in the house regularly, ostensibly for help with housecleaning. The reality of the situation became clear quickly, though never to them. We eventually managed care facility placements for both, but only after a health crisis.

Situations are never identical, but I agree with others that your mom’s fierce resistance to recognizing the reality of things and the lack of empathy are worrisome. I am also afraid that your dad is in an unsafe environment. Even if her cognitive function is perfect, she is placing him in harm’s way by doubling down on hoping for something different.

ajoec

Thank you all for sharing your thoughts and experiences. It sucks that we are all in this situation, but good that we have a place like this to come together.