LO is Mom, Dad primary caregiver but downplays

lindser31

Hi. My mom is 68 and has Lewy Body Dementia. She was diagnosed about 2 years ago, but I would say I've seen symptoms for at least 5 or more years. My dad is her primary caregiver, and my brother lives with them but doesn't help much. My dad recently hired a caregiver who comes twice a week for four hours, but I think my mom (AND my dad) needs more.  My dad is very stubborn and has had a hard time admitting the level of care my mom needs, even though he lives with it every day. He does not tell people what is happening with my mom, and downplays the situation if asked. He has a short fuse and is known to yell at my mom and get very frustrated with her. She doesn't talk much anymore, is unsteady walking, needs help getting dressed and using the bathroom, and has started hallucinating more despite her meds. She is also very tired and sleeps frequently. She cannot be alone, as the last time she was she left the house and was wandering. 

To me, it is clear that my mom needs more in-home care, or a day service elsewhere, or a full-time care facility. My dad isn't there yet, and is great at putting off making the calls (adult day care, lawyer for financials, support group etc). Has anyone been in this situation where it is a close loved one that has dementia, but another loved one is the caregiver and is not as open to help/suggestions on ways to improve the situation? I know it is incredibly stressful for my dad and I think there are things that can be done to help.

Quilting brings calm

Your dad may be in denial.  Telling himself that she will get better.  He may be having some early dementia symptoms himself and can’t process  her illness.   Don’t assume that he would have the same symptoms  as her.  My parents behaviors are totally different. Both are in the mild stages. 

A third possibility is that your mom might have previously been the adult in the room. My mom was.  She made sure all the bills were paid, check register balanced, account disputes handled, phone calls and doctor appointments were made, etc.   These are not things my step-dad can handle at his age ( 82) and cognitive function.  So I have picked all that up.  Dad still goes to the grocery store because he wants to- I wouldn’t buy all the junk food he does because they get all their meals provided in assisted living. 

You might have to make those appointments and just tell your dad after they are made.  ‘ hey Dad, I’ve called the lawyer to set up a meeting to discuss things and tell us the various options.  I will go with you as your note taker ‘.   

‘hey Dad, I’m going to go tour abc adult day care.  Do you want to go with me so you  know about it if the time comes that mom needs it’.  Then tour it even if he won’t. 

mommyandme (m&m)

Not that I have any experience with this issue, but my first thought is maybe your dad feels as if he failed, since they need more help.  No one likes to admit failure.  Of course in no way is failure a reason for her disease and progression of the disease.  It’s dementia doing this to them. If that is part of his thought process, maybe there’a way he can accept he’s got nothing to do with her progression, he’s not failed your mom.  On the other hand, his failure to act may be detrimental for both of them. 

Very sorry for your situation. 

Wishididntneedtobehe

Hello,

Yes I can relate to your situation. My mom has been the same way, in refusing to allow more help.

My mom initially refused my and other family member's help- even though it was obvious she was overwhelmed. Then she allowed me to help but would not allow other family members or paid people to help. In April she finally was willing to place my dad in daycare and that has been really helpful for both of them. 

The  changes happened because she was no longer able to continue- she got to the point of probably just shy of losing her mind before agreeing to more help.

I think she needs more help than she currently has, but I am happy she has been willing to slowly agree to getting more help.

She had my dad diagnosed out of the area, she doesn't have a local neurologist as far as I know, she resists putting him on any medications, and she doesn't want a support group.

She's stubborn. But she is slowly learning she can't do it all.

I am sorry you have to sit by and watch the sh-- show. I am in a similar situation. I definitely feel a difficult situation could be less difficult by using the available resources.

I know that my mom is really having a difficult time processing everything and she's not typically one to ask for help. 

Since you can't force your dad to do anything, may be just try to give the support you can and wait till he's ready to seek out further help.