Fork in the Road

Wilted Daughter

Since the journey of sole caregiver began I have been dreaming, thinking, planning for the next chapter. I've tried to stay in the moment, live each day at a time but since my injury on 11/6/23 (see previous post) I feel that staying is more harmful than leaving.

In 2019 I put my things in storage and moved back to a place that I feel I do not belong or want to be. Mom is 92 yo and desires to stay in the house and then buried over 1,000 mi away. I've done my best to keep her home but I need to focus on brighter days without toiling in the soil and thinking about 'this old house'.

While recovering from my injuries mom's in SNF, but I am researching putting the house on the market and mom and me can move to a more manageable, enjoyable location. The winters are brutal, although this one is mild so far, but I already know where I rather be. It's time to plan and take steps towards a future away from here (leave it behind, no regrets, and don't look back). I don't feel like it's my home just a house.

If anyone has experience with moving on with your LO or mom, I would like to hear. Thank you for reading and sharing.

Anonymousjpl123

Wilted daughter That is a tough one! But since you are sole caregiver, I would say your needs need to be a priority. I understand your moms desire, but you cannot give up your whole life to fulfill her dream of staying in that house, unless that is your dream too.

I would explore options, see what’s possible, and then begin by explaining to your mom the move is necessary. It’s no different than if you had to put her in assisted living or memory care, which would also require a move. She will be so much better off with a happier you.

others may have other opinions, but there is my two cents.

Wilted Daughter

Thank you for your 'two cents'! It will work out...the hardest part is coming to the conclusion that things can't remain the same. There are transitions throughout life that we must adapt to survive.

harshedbuzz

@Wilted Daughter said:

In 2019 I put my things in storage and moved back to a place that I feel I do not belong or want to be. Mom is 92 yo and desires to stay in the house and then buried over 1,000 mi away. I've done my best to keep her home but I need to focus on brighter days without toiling in the soil and thinking about 'this old house'.

Your mom made a wish, she did not back it up with a plan. It doesn't sound like she took any of the necessary steps to make her wish her reality. Did she plan and pre-pay for her funeral and burial to insure that will be as she wants it? Did she remodel her home to adapt it for aging-in-place with ramps, a first-floor bedroom suite with a zero entry shower large enough for her and a caregiver? Did she buy a LTC that would fund 24/7 care in her home so she didn't have to derail the lives of her family? Probably not.

Maybe I am heartless, but at a certain point for most PWD "home" becomes more of a sense of order and security than an actual geographic location. Knowing that, I feel you should take whatever steps necessary to be where you need to be rather than subsume your life to the whims of a diseased brain. When dad was diagnosed, I told my mom that she should move back to the area in which she raised me so that I could support her through caregiving. Dad had a psychotic episode but with treatment one of his dementias returned him to about stage 4-- just with-it enough to protest the move mightily and make us all miserable. I set my parents up in an apartment near me and sold both their homes for them. Once the first sold, we took the proceeds and bought mom a lovely home in a 55+ community that was similar enough to the place in FL that dad wasn't really sure where he was. I chose the house as a place where my mom could build a life in stage 7. Six years out, she is very happy there.

If you do move mom-- and I would encourage you to if that is what would make things easier for you-- I find it best to leave the PWD out of it. Make the move first if you can, and then stage and sell behind her back. She won't have the bandwidth at this point to participate in dismantling her life and stuff, so you'll just have to make choices on intuition. When I moved them north, I never told dad (or mom for that matter) that the move was permanent. I moved him into the apartment under the fiblet that he needed to be in the area for appointments with his new doctors and that once he was cleared, he'd be able to head to FL for the winter.

Peace with your decisions. This is difficult stuff.

ButterflyWings

A longtime, "former"? member, abc123 moved her mom across country 9 hours without "permission" or discussion with the PWD. We are in charge now unfortunately, because that means our LOs cannot be anymore.

Rant alert: the inconsiderate deletion of many prior posts (years of wisdom, memories, and our stories) resulting from the recent website upgrades, means many of her posts are now gone. She planned meticulously and discovered many resources that were freely shared here, as we do.

So, just confirming there have been many who have successfully done exactly what you are asking about. Your DM has had a good, long life it seems. She will not be here forever, and with dementia, everything has changed and will only get worse. Do what will be best (*edit, FOR YOU...) looking ahead to your own needs 10 years, 20 years from now...as you plan your future. We put on our own oxygen masks first, or you both are at risk.

You are going to take care of your mom's needs regardless and as her disease progresses she will have little idea where she is residing at any given time, anyway. That's my 2cents. Good luck to you.

https://alzconnected.org/discussion/57552/thinking-about-you-abc

housefinch

After reading many families’ experiences with dementia, I can honestly say this: the 3 people in my life who could need my caregiving and might say they refuse to leave their homes someday have zero concept of what caregiving can actually involve. They don’t know now what living at home with dementia—heck, what living with dementia—means. They are all coherent adults without dementia and I have already told my husband we will under no circumstances be promising anyone “not to put them in a home.” Period, end. 2 have not planned financially, have not faced an enabling, codependent mess with an adult child, and I have watched a dear friend’s beloved mother wither away in her 80s trying to fulfill that promise to her now 103 year old mother with dementia. A million nopes. I will be in an early grave if I do, and I have a child with an intellectual disability who will need lifelong care. I have to stay alive as long as possible for her.

JeriLynn66

Ditto @housefinch . And I have instructed my children under no circumstances are they to even attempt to keep me at home… put me somewhere safe and clean and buy me one of those mechanical pets, well 2. A dog and a cat.

ButterflyWings

JeriLynn66, I have instructed mine the same. Well, I said place me at home which is less expensive- with a live-in caregiver/s but not themselves. I don't know if this will be the ultimate outcome, but wanted to be very, very clear on my expectations and wishes that they are not to sacrifice their lives to step into that role. Just oversee things and do nothing extraordinary to extend my "life" if dementia is present.

I am trying to put plans and resources in place now to make that possible, for as long as possible, if I end up --God forbid -- with the same medical fate as my beloved husband.

M1

I was fortunate to get good advice to buy long term care insurance when I was in my early forties before I was diagnosed with any middle aged diseases and i pay that premium like clockwork. Not cheap, ive probably paid $75000 in premiums over 25 years but that's about 7-8 months of care in memory care. Worth every penny to spare my kids.

Quilting brings calm

Yes, my spouse and I both have long term care insurance. Although we will forgo the every three year inflation increases at some point ( both in our mid sixties). The last thing I want is my spouse or son being my primary caregiver. It’s not their natural strength for one thing.