Helping my Dad care for my Mom

FinkStyle

My Mom was diagnosed years ago. We were told many things to expect, and prepare for. Recently, my mom's condition started progressing more rapidly.
She barely eats anything, she says everything tastes unpleasant, and it is very hard to get her to consume food. She has lost a lot of weight, and she is now very frail and weak. She wants her life back, and it hurts so much that she probably won't get much better than she is now. My Dad has been very strong, but it's obvious that it's becoming overwhelming. Somehow, he needs to take care of her, without losing control to depression, or stress. He wants to get her to eat more, he thinks it may help her gain back her lost strength. My Mom doesn't want to see more doctors or do more tests, and my dad cannot really force her. I do everything I can to help. But, I don't think there is any way we can actually be prepared for what we may have to face very soon. I'm trying to find a support group for my father and perhaps myself, some way to help him cope with the rough future we are facing. It hard to ask him to take the time, when he spends every moment taking care of her. His only free time is going to the gym in the mornings, and he is already weary about leaving her home while he does that. I'm also not sure if he would participate in Zoom meetings, he would probably want to keep it more private than he could living with my mom. Neither he nor I can stand the fact that we cannot fix this, nobody can. All we can do is wait and watch, and I'm not sure I'm strong enough.

M1

Sounds like hospice might be appropriate and would help all of you. You don't need a doctor's order; you can call yourself and ask for an evaluation, and they are usually quite prompt. There are many here on the forum who can attest to that.

The hard part is going to be getting your dad to accept that she's not going to get better. This is not giving up, in my mind—but bowing to the inevitable and making it as easy as possible on all affected. The weight loss is telling and rarely reversible.

Lynn24

I agree that hospice is a good option. I had my mother evaluated a few months ago for hospice comfort care services, since she is now in late stage dementia. She has become very agitated with bathing process, and has delusions as well as paranoia. We moved her in with us almost two years ago. She is 79 years old. It is a very grueling process to serve as caregiver, and I have learned through therapy that I am given the opportunity to grieve the loss of the mother we used to know.

H1235

Can you stay with your mom here or there to give him a break or a chance to get counseling? Or what about in home care a few days a week. What about bringing him some easy meals he can just warm up(even if he is the only one eating it). What about ensure for her? When my dad was very ill he said the same thing about food not sounding good and he didn’t want to eat. We pushed and pushed him to eat. In hindsight we wished we had not spent that precious time with him at the end arguing about food and just let him be. This is so difficult.

fmb

I also agree that hospice can be of great help during the late stages of this journey. My DH has been under hospice care in an AL facility for nearly six months, and they have been an invaluable help for both him and me. The hospice social worker should be able to help you and your dad find emotional support services, whether a support group or individual counseling.

FinkStyle

I appreciate the supportive and helpful comments.
To answer some of your questions..
Yes, I do try and give my dad a break any time I can, I work full-time, but I'm taking time off when possible, if not to give my dad a break, I still value spending the time with my mom while I can.

Someone mentioned Ensure, my mom does have some nutrition drinks, she still thinks they taste too bad to drink, but she tries.

The loss of weight and strength, I agree are very telling, and not very likely to reverse. I'm not sure how much I need to convince my dad that these are not going to get better, despite his efforts, I think he knows. But, I also can't expect him to give up. My dad is a mechanic, and I am much the same, we struggle to accept a thing we cannot fix.

Hospice I think is the difficult subject here. Even for short periods of time, I don't think my mom would be okay with it. Despite her declining health, her cognitive state has not declined as much as some. She knows who we all are, she knows where she is, and what she's doing. Yes, she has constant memory problems, she gets frustrated and agitated, but she's still there. It's hard to consider telling her that some strange people will be taking care of her so we can "take a break", her happiness and comfort are our highest priority.

Also, convincing my dad its "that time" right now may also be difficult. I have not discussed Hospice or any kind of outside care with him. I'm wondering if we can afford it for one, I know it's not cheap.

As for support groups, joining this forum is the first step for me, it's a place where I can questions and get some advice from people who have or are already struggling with this. I have mentioned to my father that he should find a support group, but he wont go about doing so on his own, so I have to find one and see if I can drag him along.

I'm not sure if we need to learn new strategies to help care for my mother or find ways to take care of ourselves at this point. My mind only dwells on the fact that I am slowly losing my only Mom, there's nothing I can do about it, and I cannot even guess how much time I have left to spend with her.

MarieES

So sorry you had to join our club. Nobody really wants to be here, but we are glad to see we are not alone. There are always things we can learn or try to help ease our loved one's frustrations as well as ours. About your mom's dislike of foods, maybe you can try mixing some nutrition drinks with a real milkshake, or if there's something she will eat try to add a powdered supplement in a sauce, soup or gravy. Boost vanilla powder might work in fruit juice, yogurt or coffee and smoothies can be made with fruits and veggies. You can also try nutrition in a pill form, and slip it in with other meds. I also take care of my mom. Luckily my mom eats well and loves sweets, so I can easily supplement for now. I moved into her house 10 years ago and things just started getting harder. She's 96 now and is usually, in her mind as in her 20's. She knows the names of her 9 kids, but may not recognize us because she thinks she still has babies and we are now 58-75. She thinks her mother and my dad are still alive and she doesn't recognize this as her house. I now say it's my house and she's staying with me while my dad renovates or paints her house. I have found the videos by Teepa Snow very helpful. I like how she explains what is happening to a brain with dementia, and gives advice on how you can best help your loved one. I don't know if you will find them as helpful as I do, but maybe you will find some new things you could try. Best wishes for your family!

Teepa Snow - dementia help.
https://youtu.be/sUgPm8RMa48?si=Iz-GEEivgCTIcQAF (1-15 parts / 10-15 minutes each)

M1

hospice services are covered by Medicare so expense should not be an issue.

Emily 123

Respect your mom's wishes AND get help…sounds good to me.

Don't get hung up on the word when it could help your mom. She doesn't need to know it's hospice, they can just be additional caregivers giving dad a break.

''My Mom doesn't want to see more doctors or do more tests''. Hospice is caring support for the loved one and their family when quality of life is unlikely to improve because of physical disease. If your mom is done with tests and doctors and treatments, then get hospice on board to maximise her comfort.

It will give your dad a bit of a break and your mom would have 1-3 visits a week with professionals giving one-on-one care, whose goal is her physical and mental comfort. You can always revoke hospice. But it wouldn't hurt to ask around and interview some companies to find a good fit.

FinkStyle

Thank you for the kind words and advice.

My mom does still enjoy some sweet things, but being diabetic, she can't even have some fruits. But some sugar-free sweets may help.

Emily 123, when you say my mom "doesn't need to know it's hospice", she would know. As it is now, my dad is her only caregiver, so introducing more caregivers, will not be easy, but I agree it may be necessary now. This just won't be easy for my mom to accept (being more dependent, and on more people)

I have reached out to a local counselor, hopefully, she can help me a little, and I hope I can convince my dad that he should consider counseling too, slowly losing his spouse is obviously just as painful as slowly losing my mom.