Caring for two parents

I had two parents that had dementia at varying stages. It is one of the most difficult things, but I can tell you have already instilled several "tools" to help support them.

Mostly, talk to your parents. Listen to what they have to say. Come up with a plan together for the near-term and for the further-out term.

Similar to you, my mom was not diagnosed but I knew she had dementia with the repeat conversations and short-term memory lapses. I thought my dad however was doing decently. Then approximately one year before he died, I noticed he too was showing memory decline, and I was so sad and appalled that I missed the obvious signs he had shown earlier.

I realized both parents were living in their home of 30 years with dementia. It was overwhelming. Like you said, my parents were not eating decent meals routinely. The inside of the house was quite cluttered. Neither parent was bathing nor grooming as regularly as they always had. I would order groceries and meals delivered to their porch, but then they would never unpack the bags. I saw medications scattered over the kitchen table and I figured they were not taking their prescriptions as needed.

I called a Home Care agency to arrange to have someone come in for a four hour shift each day. It was mostly 'damage control' and for another set of eyes on the place because I could not be there every day. I made a checklist that I wanted the Caregiver to use each day and check off each item whether needed or not. I went over it with my parents and they agreed. It contained things such as get the mail, water the plants, unpack groceries, take out garbage bags, fold clothes, make a sandwich lunch for them, run the dishwasher, replace light bulbs, help with remote controls, change bedding.

I had not installed cameras, motion sensors or remote lock and unlock on the front door, but I think those would have been good steps too. I likely would have done that and monitored it that way for as long as possible.

What ended up happening though was that both parents became double incontinent. Ugh!! It tipped the scale. Perhaps it was part of the stage of dementia each were in but soiled Depends were piling up everywhere. My dad was then diagnosed with heart failure, and he already had COPD. He was still driving and was getting lost in the town he lived in for 60 years. He was older than my mom and I realized we might be near the end. My sister and I moved them both to assisted living out of desperation. I wish we had not facilitated that move because my parents were completely miserable. They never adapted. They lost their sovereignty there. They hated it and hated us for "forcing it". My dad died three months later. Mom moved to the memory care section, and she hated every single minute of her life until she just recently died of COPD.

If I could rewrite it, I would have instead done what I could to keep them at home longer because I know my dad wanted to die at home. I would have put together a home care plan that included more personal hygiene care and revised the house a bit by purchasing "fake leather" sofas that are able to be cleaned each day and gotten rid of the fabric furniture. I would have hired weekly house cleaning. I would have pursued hospice or palliative care.

Only you and your parents will be able to know when the time is right for changes. Do not feel pressured or bullied. Talk to your parents about what they want. Listen to them.

Either way, home care or facilities will incur expenses. It depends on where you want to allocate the funds. A lot of this keeps changing, and it sort of feels like an endless game of "whack a mole". One last comment is that whoever holds POA can make it so much better or worse depending on their perspective so there is that variable.

just a couple of quick things in response to some of the above. I don’t necessarily think that speaking with a parent to see what they want based on their perception of a what a care facility is like is the best idea. Care facilities have come a long way from what most people think of when they think of a ‘nursing home’. My Mom is still independent with ADLs despite her level of cognitive impairment and I 100% believe that moving her to AL was the best and right thing to do. She is social by nature and really enjoys the social interaction, activities and occasional entertainment. I would not want my Mom to be isolated in her own home with caregivers with little oversight. There is no way that I would be able to provide the level of social engagement that she has daily in her own home or even in mine. (We are considering a move to a different facility but I absolutely believe that a facility is the right choice for her. Not implying that is the case for everyone but all she wanted to do was go home. I firmly stand by my decision to not listen to her. Not thrilled with this particular facility but that’s a different story. Of course I may feel differently as her needs increase.)

The other thing that I wanted to mention is funding. One of the other factors that contributed to my decision for placement vs in home care is that every facility we looked at will keep a self pay resident after they have been self pay for a specified period of time and accept Medicaid as payment. The flip side of that is that finding a bed for someone should you need it after they are already on Medicaid can be extremely difficult. The facility that I am considering moving my Mom to is a non-profit. They have zero allocated Medicaid beds but will accept Medicaid for residents once their funds are exhausted. I don’t have a crystal ball and have no idea how long my Mom will live. If she were to exhaust her funds with in home care (it is quite expensive) I have no idea what the backup plan would be. AL/MC has a built in safety net that I don’t think in home care has. If you are in the 5 year window and think that placement may become necessary, it is worth looking in to the facility policies in your area. Another note on pricing (again this is in our area, no idea if it’s true across the board) is that it’s split in to room rent and care fees. I’m not sure how that works for a couple. My Mom’s current facility has several married couples (and one on again off again romance).

Lastly, my understanding is not that it’s a 5 year waiting period, it’s a 5 year look back period where any disqualifying expenditures will result in a Medicaid delay. Money runs out when it runs out. Or do you mean that there has already been a spend down of funds? If so, were they left with enough to provide for their care during those 5 years?

I had no idea that Medicaid won’t cover AL or MC in some states. (Although ‘cover’ is used pretty loosely - facilities just accept what they do pay here.). That’s awful.

We did a ladybird deed for my moms house and it did not interfere with Medicaid approval (that’s in my state). The problem is mom has no money left to pay utilities, taxes or insurance, so that falls on my brother and I (he recently got laid off from work and I was worried I was going to have to cover everything on my own). The upkeep on the house is another issue (my brother is not very helpful). Mom lived with my brother for a short time. She was alone while he worked (not safe for her). I found the home environment stressed her out. Everything was hard for her. So many decisions, choices to make and things she didn’t know how to do or to handle. So many things she wanted to do but couldn’t. In a safe environment where she didn’t have to worry about meals, or pulling weeds in the garden, dirty dishes….. she actually did better. She insisted she didn’t belong in Al and was angry about it, but at the same time she enjoyed activities, and making new friends. It was good for her and I actually saw some minor improvements. I know this sounds horrible, but they may need some anxiety medication for a while til they settle in. It may not be the disaster you expect🤞.