Anyone have experience with BOTH parents at once?

KikiCruz

My folks are 83 and 80, living together in their home. Dad was formally dx'd in 2022, after periodic hallucinations that there were 3 versions of my mother; he also had some aphasia but was sharp in other ways. Neurologist prescribed Aricept and it has helped a little. Mom has had mild cognitive decline for years, but it has ramped up significantly in the past year. They have always taken care of each other, and because they live in a small town and follow very predictable routines, they seemed to be getting along OK. I live 700 miles away and have a full-time job, so I do weekend visits every 6-8 weeks and longer visits when I can. If one of them was agitated or not perfectly lucid at a given time, the other one was usually OK and I could get a sense of what was going on! But in the past 2 weeks, it seems like everything's fallen apart: she called in a panic saying that a stranger had convinced her to transfer $40,000 to him (it appears this was not true, and now she doesn't remember it); he called me to whisper over the phone that "very bad people" wanted to hurt them and he needed to defend the home (then later called back to say it was OK). I can't count on either of them to give a clear view of the other one's behavior any more. I'm making an emergency trip to check up on them in a couple days. Advice about how best to use my time and what the most constructive steps would be? I will try to have her give me access to her medical records and beg her again to get an assessment (I have access to Dad's physicians). I will try to have them take me to their bank to see if they'll authorize me to, I don't know, dual-authorize if they withdraw unusual amounts from their accounts (can I do that)? They are getting the bills paid (he does that), and they are keeping themselves fed and otherwise safe. I don't think there is a case for guardianship, but they definitely need more oversight and in-person check-ins than I am able to provide. Like, I would love to have a social worker check in on them once a week, but is that even something you can arrange?

M1

Welcome to the forum. You can be added as a signatory to their bank accounts which will give you online access and allow you to take over paying the bills remotely. Talk to their banker both with them and in private, they are probably concerned too and will be glad to have your help.

You need to have medical and financial power of attorney for both of them. It doesn't sound like their current living arrangements are going to be safe for much longer, and honestly you are probably going to have to make decisions about their future without expecting them to agree to changes. Safety has to drive the decisions, not their wishes, which are likely to be unrealistic. Talk to a certified elder law attorney (look at nelf.org) regarding the necessary paperwork and their finances: can they afford assisted living and/or memory care? Do you need to get them qualified for Medicaid in addition to Medicare?

it's a lot and I'm sorry. Do you have siblings? Certainly one of the things to consider will be moving them closer to you. Managing their care long distance won't be easy as you're already experiencing.

harshedbuzz

Disclaimer: I did not have 2 parents with dementia at the same time. My dad had it and now my mom is at the start of being evaluated. M1 is spot on.

You are a heartbeat away from the wheels coming off the bus. My parents moved away in retirement and split the year 200 and 1000 miles away). I saw them monthly in the summer and at least once over the winter. Mom resisted my pleas to get dad evaluated for nearly a decade while his mixed dementia (one of which was treatable) progressed and nearly paid with her life. She became ill and he was unable to advocate for her. I called daily to check in. He always had some plausible reason she didn't answer the phone— she was at the pool with friends, left her phone when she went to Publix or was taking a nap. I did get a hold of her a few times and she mentioned not feeling well so when I got no answer 2 days in a row and called police for a well-check— dad answered the door and said he was fine and mom was at the pool. A few days later the local hospital called me to inform me they weren't sure mom was going to make it.

It sounds like each is propping up the other. But with dementia being progressive, that will end. It may have ended already with the shoes poised to land on your head momentarily.

Their care needs to be appropriate to them individually at their worst. If dad has delusions and hallucinations and mom may or may not be falling prey to scammers (or potentially confusing TV with reality), they need to be in assisted living at a minimum. Ideally, the AL should allow them a transfer to MC as needed and it should be local to you or whomever is their POA/guardian. You could hire an Elder Care Consultant (usually a freelance social worker) to oversee their care where they live now but that gets expensive. These highly educated professionals are not inexpensive.

FTR, I moved my parents back to where I live. Because mom was cognitively OK, they went first to a 55+ apartment community until I was able to sell their homes and move them into a 55+ active adult community where mom still lives. As dad's care needs progressed, we did need to move him into a MCF. You'll need to consider the financials of care for 2 PWD at the same time. It might be doable— although way more work on your end— to bring 24/7 care to them in a home or additional private aides to AL for about the same as 2 MCF beds.

HB

Quilting brings calm

HB gave great advice. I was a long distance daughter for a few years. It ended with a medical and cognitive crisis and an emergency type move back to our home state. Mom immediately spent a week in a hospital and a month in rehab. Then they moved into an assisted living facility 35 minutes from me. The facility charged a significantly reduced rate for a second resident in a shared apartment.

Who is currently taking them to doctor’s appointments etc? Even with my parents ( only Mom now) in assisted living, I spend a good amount of time attending doctor visits, managing their finances, grocery shopping etc. Some weeks I see her 3 times, others only once. Often more than originally planned for that week.

mpang123

My dad has vascular dementia and my mom is showing signs of Alzheimer's dementia, according to her neurologist. Right now my mom is able to take care of dad, but I'm closely watching the progression of my mom's symptoms. I am embracing the future where I will have to get more involved in their care. My nephew and I have POA but is only effective when my mom is determined incompacited, per my mom's request. I have anxiety over how I am going to take care of them when they both get worse. I'm disabled myself, but I do have a lot of professional support. May you find guidance and support in caring for your parents. I find the info and support from the teammates on this forum to be valuable also. Best wishes to you.

Smilescountry

A wise doctor friend of mine told me when I told him about my own parents who were both showing signs of dementia that if I am noticing signs that are concerning that the real situation is probably worse because they are likely covering well for each other. My sisters and I found that to be true. He also told me to be sure that my sisters and I could agree on what needed to be done so that our parents would not pit us against each other. It was very difficult because we each came from different experiences caring for our own in-laws, but we got it done. I took every opportunity to gently help my mother see that there were ways for her to help Dad if she would only agree to them. I also told her that I would be glad to have her show me how she does her finances so that I wouildn't be in the dark when I would need to take over. (Within three months, she was letting me take over as long as I would type up a monthly summary!). Dad was on the verge of wandering and was hallucinating, and Mom, with her MCI, could not problem solve well enough to take care of him. I told her that we needed to be thinking now about where they might live when things became too difficult, so she and Dad gave me a list of places to check out. They resisted strongly having anyone come to their home. Within a month or two, Dad got much worse, so Mom agreed for us to move forward as long as they could stay together. There was one, smaller, place we found where they could be in rooms next to each other, and it was beautiful and would allow them to continue their bird-watching hobby (serious bird-watchers!). Not to mention that all the staff seemed to be well-trained in caring for people with dementia. Dad was officially diagnosed with Alzheimer's in September of 2022, and just after Christmas of 2022 they had moved to the assisted living facility. Dad had a moment of lucidity a few days before the home visit when he told Mom that it was time to move to a new home so that their girls wouldn't worry!

I would suggest that you contact their area council on aging and also the Alzheimer hotline found on this site because both can be very helpful. If you are not their HCR representative, you can still send a letter to the doctor telling him/her what is going on. The doctor might not be able to call you back, but the letter could be very helpful. There are people that can be hired to check in on them, but it does cost. If they have a church, they might have friends who can check on them for you. My great grandparents did not have the finances to move from their home, and my grandfather lived out-of-state, so he paid a church member they trusted to do the things that he could not.

Again, you might not have as much time as you think before things get bad quickly, so I would do everything possible to act, especially talking to a lawyer and the doctor. I felt like a broken record telling my mother that there were answers to their problems and that we girls could help, but we finally got it done.

H1235

I have read here may times that the level of care a pwd needs should be based on their worst day. Based on the symptoms and actions you have described I don’t think it’s safe for them to live together without help! You can’t wait for them to agree to a higher level of care, since they will probably not be aware of the need. Could you get their doctors opinion on their living arrangements, driving and level of care they need. When my mom was diagnosed with dementia the doctor told her right then she shouldn’t be driving and she should no longer live alone. Sometimes a pwd takes this news better from a doctor. The doctor can also be a trusted opinion on their living situation for you. You say they are eating well and bills are being paid, but it might be hard to really know that for sure. Many people here have said they had no idea how bad thing’s really were until they really dug into finances and did an extended stay. I would definitely see a cela. You will eventually need to make decisions for them, since they will not be capable of doing so themselves. If you could get a DPOA for both of them that would be ideal. If they won’t do that then you will probably need the guardianship eventually. Knowing what’s involved, what is needed and how long it will take, will prepare you for when the time does come. You have a lot of difficult work ahead of you. Know that this forum is a great place for advice and at times to just vent. Good luck to you.

I have attached a staging tool that is very helpful. Notice it gives the approximate age they are at as they digress. This might be helpful in determining the extent of the care they need.

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

KikiCruz

If anyone is checking back, I just want to say thanks to everyone who replied. After three weeks and two more visits to see them, I have woken up to how bad this is now and how bad it's going to get. On the plus side of this wild ride: I discovered a notarized DPOA they had granted me in 2017 (yay Mom & Dad thinking ahead!) and now have access to their accounts. I am also interviewing for in-home care specialists and have learned about all the local resources and have taken over doctor's appointment scheduling. On the minus side: the scammers found a workaround with my poor mother and got her to mail a $10,000 check to an address across the country—a check immediately cashed and probably not recoverable. I'm sure I will be here more regularly from now on, learning from your wisdom.

Chug: that's a helpful PDF and also devastating. Thanks. mpang123, I think we're in the same boat; best to you.