Dad needs care too, though.

Firefly4777

Hey y'all!
So my Dad is 82 and in relatively good health. My Mom is 80 and is in late state Alz. ( I think.)
Her symptoms are a little different than some, in that she is unable to really hear…she can't see well…thank goodness, her attitude is usually upbeat and positive. However, she doesn't talk much now and when she does, it's all mostly "nonsense." She will, thankfully, still get up and down/walk/uses the bathroom, but you have to sit her on the toilet. She cannot wipe herself or shower on her own. She can't feed herself etc.
The point is, my Dad cares for my Mom 24/7. He literally gets up with her at night 3-4 times, taking her to the bathroom and back to bed etc. He cooks her breakfast, gives her her medicine, feeds her, bathes her etc. EVERYTHING.
My brother and I help as much as we can, but Dad usually just does it himself, even if we offer to help. We do take turns cooking and feeding her meals and we try to stay with her every now and again, to allow him time to leave the house and have a break, however, I know it's not nearly enough. He is alone with her pretty much all the time. I work almost an hour away and I have 3 older kids of my own. Dad hates the idea of a nursing home and I totally understand that, especially when he is relatively his "normal" self, but Mom is not.
Dad can still drive and does yard work etc. That sort of thing. However, he is still 82 and recently, his younger brother passed unexpectedly. His brother was his best friend. That absolutely broke his heart and he was (and IS) grieving that while still taking care of Mom 24/7. Dad says that money wise, we just can't do a nursing home yet. Same with hiring someone to sit at the house. I know he would NEVER leave his home to move into Assisted Living with Mom. I feel like it would crush his spirit. I guess my question is, how on earth can we help my Dad and give him breaks that he needs, when it's physically impossible for us to be there all the time or even as much as we would want, due to our own schedules with work/responsibilities and my kids etc. (I"m divorced, so no extra help here either.)
I worry that Dad is going to injure himself or overdo it and I know he just loves Mama and is trying so hard to keep her at home, because she does seem to know she's "home". UGH.
What are some other ways to offer help and relieve him of some of this?
Any other ideas?
Like I said ,his brother was his best friend and now, he is gone.
Most of their other friends are in their 80's too and are fighting their own battles.
My brother and I are there all the time and my kids come to see them too, but I know it's not the same as having friends and being able to just come and go as you need to etc.
My parents have been married over 57 years now. I appreciate so much how he cares for Mama. However, how can I help?
I do cook now and then…we take turns feeding Mom…I run errands/groceries for him…I clean the house etc.
But I know Dad is lonely and he's heartbroken seeing Mom like this.
She's not able to relive good memories with him or even hold a conversation.
SIGH.
What a horrible disease.
Thank you for listening and I'm open for any ideas.

XOXO Love to you all.

kathyharris860

I totally understand your situation. My Dad was in the same situation with my mom. After the Pandemic he told us that he couldn't do it anymore. We moved them into an AL and Mom went to MC during the day and back to their AL apartment for dinner and bedtime, then started eating dinner in MC. Then a two-person room opened in MC (there are only two of these in the MC) we moved Mom to the MC and Dad to a one bedroom in the AL. Within 6 mos Mom's roommate passed away and we decided to move Dad in with Mom in the MC. Now, a year after moving Dad into MC with mom, he is less cognitive than Mom is. Neither is able to carry on a conversation and Dad is falling but hasn't had a major injury (yet). Dad is 94 and mom is 89. We are considering Hospice for both. Neither has any major medical condition other than those that go along with dementia (incontinence, falls, etc). Dad is now agitated and unable to sit for more than a couple minutes. The MC is unable to monitor him to keep him safe and we are considering either a full-time helper to be with him (there are 4 of us within an hour or so of the MC). He has never done well on anti-psychotic meds, so we aren't sure what to do. We thought keeping them together was the most important thing, but now I'm not sure they even recognize each other. The MC is recommending a Skilled Nursing Home which we have been trying to avoid like the plague!

Long story, short, I would recommend getting your Dad help as soon as possible. Caring for your mom is shortening his life and reducing his quality of life. This is an awful disease, and it impacts everyone!!!

SusanB-dil

Maybe look into an adult daycare near dad for a few days a week. You are correct, gotta take care of the caregiver.

harshedbuzz

@Firefly4777

A couple of thoughts.

Most important is a Plan B. What would you and your brother do about mom if dad had a medical issue that landed him in the hospital for an extended time or he

was one of the 1/3 of caregivers who dies first?

harshedbuzz

Sorry, the site isn't letting me edit the above…

You need to have the legal paperwork to take over mom's decision making and plan to move her into your home (or you into hers) or place her in a MCF or SNF depending on her needs. Bear in mind that your dad is likely providing a lot of scaffolding to keep her functioning at her current baseline and that with him gone, she will progress noticeably.

The best thing you can do, assuming your parents own a home, is take dad to see a CELA (elder law attorney) to talk about Medicaid planning. If he's keeping her home in order to keep his house, there are strategies to get residential Medicaid and remain in the home as a "community spouse" with enough money to live on until he passes.

HB

Firefly4777

I just wanted to say THANK YOU to each of you.
Thank you for this association and for this page.
My mama passed away at home on Thursday, June 19th at 2:30am.
She was taken to the doctor on June 6th for what ended up being shingles and a UTI.
At that visit, the doctor suggested that we may want to look into In home hospice care.
(due to seeing how quickly she had declined mentally and physically.)
Once Mama had to use disposable briefs, my 82 year old Dad was just unable to care for her any longer. My brother and I were with him, but we also had to work, so sometimes no one was there to help. That is when the decision was made that it was time to ask for help. We spoke to Baptist Hospice and decided that having a nurse visit 3 times a week and having a CNA visit daily would be the best thing for Mama.
She was in so much pain and everything seemed to change so quickly.
This disease is so horrible. She battled it for a total of more than 10 years.
We are very thankful, first of all, to our Dad, who faithfully fulfilled his vows to Mama.
Their 58th wedding anniversary was yesterday… she missed it by only 3 days.
She was 80 and he is 82, but he never left her side.
He cared for her, bathed her, fed her, dressed her, gave her the medication she needed and he was with her 24/7.
He is our hero.
We are also very thankful for MS Baptist Hospice and the wonderful care they gave to Mama.
I am SO thankful that we were all able to be with her, around the clock, in our own home, until she passed. It was SO hard seeing her seem to hurt, but the nurses assured us that her medication was helping and that she was not in pain.
What bothered me most, was how long the process took. While it sounds mean, I certainly don't mean it that way.
What I mean is, you want them to just be OK. You want them to be healed. You want them to not hurt. You prepare yourself as their breathing slows, and sometimes stops, then starts again and it just rips your heart out. We are so grateful that she lived a few days past what was expected, but it was also so tough for everyone. We are happy we were able to get more hugs and tell her "I LOVE YOU" many times before she left. What a blessing.
I just want to encourage any of you who are also going through this right now, Stay Strong.
Keep loving on them and talking to them and telling them stories and say everything you feel you need to say, while you have them.
Also, keep in mind that at this stage and if they are in hospice care, the brain has literally turned off the receptors for hunger and thirst.
This was one of the worst parts for me, because I felt like we were starving her to death.
It took a lot of conversations and convincing before I finally understood and felt at peace, knowing she was in fact, not suffering.
I am heartbroken and always will be, but this community helped me SO much throughout Mama's illness.
I want you to all know how much I appreciate your advice and your support and I want you to know, it really will be ok. Keep loving them and keep standing strong.
Be gentle with yourself and understand that you really are doing the best you can do, with what you have.
You are all wonderful and I pray for God to give you peace and strength during this fight.
My prayers and love are with your sweet loved ones as well.
Much love to you all,
Beth





bizzychild08

I am so sorry for your loss Beth. What a powerful and hopeful post I needed to read.

psg712

Thank you, Beth, for the gift of encouragement even in your own grief. You and your family did all that you could for your precious mother. May God bless you with peace and comfort.

SDianeL

so sorry for your loss. 🙏💜

harshedbuzz

I am sorry for the loss of your dear mama.

HB