Dad is going downhill fast and he is mom's primary caregiver

TrumpetSwan

My dad, the "good one", is mom's primary caregiver for the last six years as her dementia has continued to progress. He has COPD which he has had for 20 years and until about one year ago was managed well with medications. The last year however it seems no medication the specialist prescribes is effective. I visited them a couple days ago, and my dad's appearance was startling. He was gaunt and tired, and he usually always looks well put together. He refused to go to ER. He keeps saying he is fine. My mom started crying because even she can tell his health is failing, and she keeps saying she does not know what to. She also then would tell me both of them are in their mid-80's, so they have lived a good long life and have no regrets.

A couple months ago I scheduled someone from a local Home Care agency to do an introductory visit and we discussed a care plan. At the time, mom and dad thought it was too expensive. Dad was resistant. However, they agreed to reconsider and I have contacted the agency again to start the paperwork for in-home care. Hopefully, that can provide dad some relief. If we lose him, mom will need to go to Assited Living with memory care. I have visited two that are close to my house already, so will be contacting them as needed to make those plans for her.

I have read it is not uncommon for the caregiver spouse to go first. My dad has put her at the center of his existence since her condition became clear. They have been married 65 years. He is the ultimate caregiver and always has been even as a father. I am going to ask my dad if he wants me to go with him to see his primary care physician as I wonder if something else may be causing his recent rapid decline and I hope to still be able to have a chance to address it if possible. I am no doctor, but I feel like we have only weeks to months remaining.

I guess I wanted to ask anyone who has been in a similar position, is there anything I should be doing for them or other steps I should be taking? I sort of feel like this has gotten to a point that I can no longer fix this, but I do not know.

Thank you.

JDancer

Going to the doctor with him is an excellent idea. Prepare a list of questions/concerns and write down what the doctor says. Doctor visits can be overwhelming for everyone. Good luck.

Quilting brings calm

You mention medications, but not oxygen or a nebulizer. My step-father has had COPD for about 20 years. He’s used oxygen at night for many years and began using portable oxygen about 5 years ago at various times during the day ( walks from their apartment to the AL dining room, etc). He uses a nebulizer( think breathing treatments) also. It might also be time for a CT scan of his lungs to see if anything else is going on.

VKB

I am sure this situation is extremely hard for you. I'm hoping they both have made you their Power of Attorney and their appointed Health Proxy on paper so you can make decisions needed for them since they both might be unable to do this. Other than that, I'd say help care for each of them as needed or if you cannot, help guide them to the care best for them. I prayed for all of you. Ronnie (Veronica)

TrumpetSwan

Thank you for the replies. I will try to get dad to his PCP. He has been using his nebulizer regularly, and I think a couple times a day. I do think something else is going on besides asthma. He is so frail, it is going to be hard to get him moving anywhere to be assessed. I just ordered food and groceries delivered to their door. Thanks for your prayers.

ButterflyWings

TrumpetSwan - I am sorry you are going through this worry and also that your parents are struggling so. It seems like they should be eligible for some amount of HHA support that would be covered by their Medicare or other insurance.

Their local Agency on Aging, or Senior Services for their local municipality may be able to help you identify subsidized resources for his respite needs, or his/her existing home health care benefits - even if you have to add something out of pocket eventually to get to the total number of hours needed.

Finally, maybe the Care Counselors at the Alz 1-800# might be able to help identify a list of contacts in their area, if you haven't tried that free, 24/7 helpline yet. The number is above at the ALZConnected Resources link, I think.

harshedbuzz

@TrumpetSwan

I am sorry you are dealing with this. Ugh. I was where you are about 5 years ago-- it's hard.

I am going to suggest 2 other scenarios.

Do a deep dive into the medication. Is he actually taking it as prescribed? In the later stages of dad's dementia mom was overwhelmed-- she had aides 3 times a week and I was at her house at least as often bring meals or taking dad to the doctor. I knew she was having a hard time, and I made sure she had a IRL support group, a psychiatrist for depression/anxiety meds and a talk therapist. It wasn't enough. She got to a place where she felt hopeless and stopped taking some of her meds-- her wacky sister convinced her to stop ger statin because feelings, she was left on hold "too long" with the PCP's office when trying to renew her BP meds so they weren't and she stopped using her daily COPD inhaler because it "didn't bring much bang for the buck". She tried to claim it was because she was too busy but the reality was that dad spent the last 7 weeks of his life in MC. Mom never liked talking to strangers on the phone, so I am used to making calls or managing tasks online for her.

I didn't find any of this out until a few months after dad died. Mom had a COPD exacerbation that led to an ER visit and admission with dangerously HBP and sky-high cholesterol. Because they treated the BP so aggressively, her optic nerve was damaged impacting her vision. She can no longer drive and is not living the stage 8 she had planned on. Neither am I.

I would go with dad to his specialist, leaving mom home with an aide. About a year before mom's hospitalization I went with her on a routine pulmo visit. I had expressed a concern that mom didn't seem to have the energy she did even 2 months prior, and he said, "that's what 80 looks like, get used to it". I found someone better and took her there a few weeks later. He did breathing tests, looked at her BiPap records and listened to us both. He changed her meds, gave her an OPEP and suggested seeing her cardiologist because he was hearing valve regurgitation. She is doing so much better with a doctor who treats her like he would his own mom.

HB

TrumpetSwan

Thank you again for the comments. Thanks too Harshedbuzz. I fell asleep last night feeling totally exhausted and slept 10 hours straight. My husband had to wake me up to go to work, and when I was still drowsy he asked if I was OK. I don't think he understands the emotional toll this takes.

It is just me, alone, seeing what they are going through and making arrangements. I have an older sister, but she does nothing and that is a different story.

I am sure my dad likely does not take his meds as directed. I am also sure he is not doing anything for his own care in other regards either. He does not ask for any help. When I suggest anything that might help, he seems too overwhelmed to follow through (support group, senior center for social activities and luncheons, etc.) He does not eat much or get physical activity. Most of his friends have died so he has no emotional support. I saw him a few days ago, and he scared the daylights out of me. It seems to me caring for my mom is literally killing him, even if indirectly.

The ripple effects just seem to keep hitting me. This is really hard. Thanks.

eaglemom

The advice you have been receiving is spot on. It is not uncommon for the caregiver to give their all to their LO. It is also not uncommon for one sibling to be handling everything. It is overwhelming but yet you don't have to discuss your parents care with anyone - that is a blessing.

Looking into both parents properly taking their medication is a good place to start. That way you have a handle on the medications. When you order their groceries try for things that dad can easily reheat. The prepared food has come a long way!! You have to make it easy on yourself and them.

If you do call the 800 please ask to speak to a Care Consultant. Have to checked if your local ALZ Chapter might have any programs to help you help your parents? Its worth a phone call.

We are here to help, we have wide shoulders to help you through this.

eagle

harshedbuzz

@TrumpetSwan

From your update, I wonder if what your dad needs is permission to place your mom. He's no longer up to a task that would be done by a team of well-rested and dementia trained professionals. You wouldn't hire an 80-something in his condition for a single shift much less 24/7 caregiving.

There got to a point where I recognized that dad's care was draining the life out of my mom. I reasoned, begged, cajoled, bribed and finally threatened mom with placement. It took some doing but was life-saving for us. Because dad saw the aides as professionals, he submitted to their care reliably and ended up in better condition than with my mom nagging at him. Because she was well-rested and relieved of hands-on care, she was able to visit and just love on him which was nice for both of them.

I don't think anyone who hasn't lived this can appreciate the weight of the responsibility elder care can be. I am fortunate that my husband mostly gets it but sometimes I am surprised at the emotional exhaustion I feel even now that it's just my mom and she doesn't even have dementia. She was the baby of a large busy family and now that they and most of her friends are gone I find I am not enough to fill the space they left behind.

My younger sister died almost 30 years ago leaving me a de facto only. TBH, after reading some other posts here I am grateful not to have the additional burden of consensus with sibling(s) who aren't on the same page as I am. I know my sister would have complicated things.

HB

TrumpetSwan

Thank you again everyone.

BookBuffBex

@TrumpetSwan I was in the same position as you just about a year ago. My dad has CHF (which has caused chronic kidney disease) and macular degeneration as his main health concerns. We were still getting mom officially diagnoses with ALZ/dementia. My mom's memory makes it so that she cannot understand or remember that my dad can't take care of her the way he used to. It became clear to me that neither of them were safe to remain in their townhouse condo. I moved them together to AL last November. As my mother's memory and behavior deteriorated over the last year, it was negatively impacting my dad's health. They now have separate apartments in the same AL facility. Dad is on the "traditional" care side, Mom is now in the MC unit. Unfortunately, all of my mom's worst traits have become so prominent that it is unpleasant to be around her. My dad understands that it was affecting the quality of whatever life he has left as an 86 year old with multiple health conditions. It's a bit sad, but it's like he has a new lease on life being separate from mom. He socializes, goes on group outings, and recently has taken to playing pool. All things that mom refused to do and because he wanted to keep her happy he would never do these things for himself. It's not easy, I am still emotionally exhausted. I have had several discussions on with my husband about the emotional toll this takes on me. Even though things are "calmer" now, there is always this worry in the back of my mind; always wondering what the next phone call will be and that it is exhausting. Fortunately, he's been very understanding .

I think you are on the right track and asking the right questions. If you can get them to agree to in home assistance, it is expensive but still cheaper than AL. It's a good first step to get some help while you figure out what comes next. Good luck!!!

TrumpetSwan

Thanks, BookBuff. I am so grateful for those who have replied to this post. I think what you say about the caregiver spouse not doing what they enjoy because their spouse cannot participate is so accurate. Then it ultimately takes a downward toll on them too. (And then as the ripple effect moves outward, we as the adult child see it and try to offer assistance and it then takes a toll on us too.) It is nice to see that your dad now is enjoying the social aspects available to him, and receiving the benefits of that.

I have Home Care scheduled, which they fortunately agreed to and will monitor how that goes. I have toured two ALF's with MC close to me and have a tentative plan to move them to one of those when the time comes.

I think what is SO HARD is the snail's pace at which it is unwinding. It has been almost 6 years, which to some may not seem long. They made it through the height of the pandemic. Now mom's dementia could continue on for several more years as I just sit and witness the decline. I think it would be easier on everyone if it was just a short-term condition with a rapid decline where you just get hit with the shock wave once. I am sure I am not the first to ponder that.

Thank you.

Quilting brings calm

==I think what is SO HARD is the snail's pace at which it is unwinding. It has been almost 6 years, which to some may not seem long. They made it through the height of the pandemic. Now mom's dementia could continue on for several more years as I just sit and witness the decline. I think it would be easier on everyone if it was just a short-term condition with a rapid decline where you just get hit with the shock wave once. I am sure I am not the first to ponder that.==

You definitely are not the first. My parents have been in AL for over 4 years. We moved them back to our state as part of getting them into AL. We made 3 emergency trips 12.5 hours each way in the 18 months before that.

I anticipate my 83 year old step-dad is no more than a couple years away from the inevitable due to his physical conditions. Mom could either go quickly after that of a broken heart or last for several years. She’s 85, her mom and grandfather lived until their late 90s. At 65, I could be doing this until my mid 70s. Them being in AL helps, but there is still a lot of involvement and frequent drop everything times.

TrumpetSwan

Thanks, Quilting. I get the frequent "drop everything" moments. I find it not entirely sustainable if you want sanity.

My mom is also 85 and dad is 89 next month. Mom has no other conditions, so all signs point to her living on for many years ahead. What nobody ever talks about is how "living to an old age" also means there are likely adult children also aging and caretaking of an elderly parent into your 60's and 70's has impacts on us, impacts our quality of life, and has life-changing aspects all its own.