Father has AD and I am looking for support

Toddw

Hello all.

Noob here, but I have been taking care of my dad for 5 days per week for the past 10 weeks and am getting some burnout(I am running two households in winter and it's suddenly become nearly overwhelming)

I was doing quite well until this past weekend when everything hit me. He's at home as yet, and doesn't need a great amount of care, but my notebooks(3) point towards a quickening of his lack of abilities. It seems like a logarithmic worsening the past 6 or 7 weeks.

My problem is certainly emotional as I am still intellectually certain that with a bit more care he can remain in his home. I know that this is absurd, but I have always been able to fix things by application of the mind to a given matter.

Essentially I'm asking those who care for their LO in their home just how do you do it and stay sane?

My sister has started to help but she too has another household, so my load is ever so slightly lessened, but I want to be proactive in protecting my mental health from burnout and all the negatives that come with that.

I welcome all suggestions.

Thanks for reading,

Toddw

I'm open to any and all suggestions as I need to be better for my dad so that I can provide the best care while he is still able to stay in his home.

Thanks for reading,

Todd

Toddw

Sorry about the reiterations towards the end. I normally gather and place my thoughts in a more logical manner.

DCCEPEK

Stay on this forum and read. We're all on this dreaded rollercoaster of Alzheimers. It's long journey my husband and I have his Mom living with us, stage hard 6 maybe 7. If you can place him and live comfortably, Do it for your sanity. We've been married 40 yrs and this is the most challenging thing we've faced. You can't go on with 2 households. Get legal affairs taken care of. POA and much more. Many others will ring in with more info there's a host of knowledgable people here. Stay tuned in you'll be happy you did.

darcytg

Welcome Todd,

Glad you found this space and the people here.

Caring for our LO's experiencing AD is draining in all domains. If I may offer, staying sane is done by not being the only care giver, getting educated, finding support in many ways for you, taking just as good care of you as of your LO and having your alternate plans in place (in case you can not care for your LO because you fall ill, etc).

I briefly (2 months plus) cared for my LO in stage 4. I didn't know anything in the first month and only found this space toward the end of my stay with my LO. I relate to being one who's thoughts are usually organized and clear...and then not being in that space.

There will be others along who have far more experience nd wisdom than I.

Post here, read here, get educated...care blazer videos, teepa snow, tam Cummings...and the people living it here are all great resources.

Glad you have a sister who's able and willing to asssist.

This journey is fraught with distressing situations and deep emotional and mental turmoil.

Best suggestion I have .... cherish and enjoy the moments of joy and connection with your Dad. Imo, these will be the things you find important when looking back.

Glad you're here. Sorry for the need to be here.

M1

Hi Todd. When you say you are certain your dad can remain at home, are you confident about his safety in an emergency situation? Would he know to call 911? Is he safe to use a stove and microwave? Could he handle a fire or a plumbing emergency? Can he put even a cold meal together? Can he bathe independently? Is he driving (hope not)? You may need to check the refrigerator for spoiled food, check the house for upkeep and repairs. How about managing his finances? Would he recognize a scammer on the phone or at the door?

These are all things to think about when you decide whether someone can live alone or not. I would comment in general that we all tend to overestimate our loved ones' abilities. If it has occurred to you that he may be close to needing fulltime supervision, he is probably already there. Never easy to make these changes, but we always say on these boards that safety has to drive the decision-making. If you don't already have power of attorney for him, that is something else you need to pursue. It is rare for our loved ones to make changes in their living situations voluntarily. Read about anosognosia-he may well think he is fine.

mommyandme (m&m)

Hi Todd, welcome to this forum, glad you’re here but sorry for the reason!

After moving mom across state lines, to the house behind us, I became her 24/7 caregiver for 2.5 years. My brother (also in another state) and I managed long distance caregiving for almost two years with the last 6 mos being 24/7. It just became too difficult…long story. We kept mom “home” until she passed unexpectedly (even though she was late stage 7, Covid took her…another long story).

The ways I “survived” were having mostly daily help, this forum of very wise and supportive folks, a very caring husband even while I slept with mom in her house every night, my brother who partnered with me throughout and took care of her financials, my mom saving and planning for her end of life care, cameras, our hospice team who were with us for 1.75 years and mom being a compliant and kind soul, for the most part. I also acquired a CNA license prior to moving mom which helped so much, especially with the down and dirty parts of this disease.

Even so, I wasn’t sure I’d make it. My brother and I knew that a facility placement may happen at any time. When mom became bed bound, about three months before she died, there wasn’t much reason to think about placement anymore since I was doing all of it anyway. Kind of a relief to have the decision finally made; mom was going to stay in “her home” for the duration. So when I say I was doing it all, I did have the daily help. I had relief to get away even if I still did all the toileting. (For some reason the service was never able to get someone in willing/able to change her adult tabbed briefs in bed, weird). Since daily help is an objective solution, along with this forum and cameras, I highly recommend them. Please get respite help in so you can care for yourself.

My thoughts are barely ever organized in a logical manner. 🥴

Emily 123

Hi Todd, You say this: ''...I need to be better for my dad''. Don't add pressure to what's already so stressful. You're doing a good job. You can't help the increasing demands caused by the disease.

You're understandably stretched a bit thin, and you and your sister have your own household obligations to keep up. Those are equally important when you weigh what's reasonable in this situation.

I'd say you're at the point that many of us come to when our eyes and minds tell us one thing and our hearts want something else. Bumping into the reality of caring for someone with dementia is tough. Outwardly they talk and look the same, but the ability to consistently make good decisions, and to be safe is gone. That means that decisions may have to pivot from what your dad wants to what your dad needs (which, because of the disease, he may not be able to recognize). And that means that you'll have to do the loving but very difficult thing and take over the decision making for him, even if it feels counter-intuitive to the way you've been raised.

It may be that you can use an aide and/or perhaps an adult day care (if there's one locally) to keep your dad occupied during the days for a while, but consider if he can rescue himself if he's alone, and know that a progression will occur, and it can drag out for years.

Perhaps weigh what outside help is likely to cost and see if that's something your dad can afford, or consider if it makes better sense to sell the house and use the money to move him into a group home or assisted living/ memory care while he's still able to adapt to changes. Maybe think about it like this...he could have aged out normally from being able to maintain a home, or fallen and broken a hip--then a move into a different living situation with more built-in support and where it's easier for him to navigate wouldn't be an unusual decision to make, and you wouldn't be exhausting yourself to try to keep him in his home, right? This is kind of like that, where more support is needed.

It's really hard to become the decision maker.

H1235

Help does not just have to be in the form of a health care aid. Consider a maid service, hire someone to mow the lawn or shovel the walk, a handyman for repairs…. I found making meals up and freezing them helpful. I also purchased large quantities of things she used often (depends). This saved me making a special rush trip to the store when she tells me she is out. Just being proactive by buying things to have on hand. Managing bills myself was way easier than trying to help mom with it ( she made a mess of things). Helping a lo can be a lot more time consuming than just doing it yourself. I know it can be hard on them taking that responsibilities away, but it might be best. Good luck.