so overwhelmed

GeorgiaJo

my mom is 73 and newly diagnosed with early moderate alz. the plan in our family as our parents aged was for me and my husband to move in with my mom after my dad passed (as bad as it sounds, we assumed this because he has had heart issues and tons of other health problems for years and he's 78 while she's healthy as a horse and walks miles everyday). Now, I have multiple chronic illnesses myself, but I always pictured me caring for mom more and prob needing some in home care for a few hours a day, but having long talks like we do and laughing. Now the reality of how much care mom will need as the alz progresses is overwhelming. I'm already feeling like I'm mourning her even though she's still here and mostly very aware and knows and loves like she always has. I know she's going to get mean, and say terrible things, and it will not be this loving, caring process. idk if I'll be able to handle it,.physically or emotionally. my mom is my best friend, my rock. idk if there will be enough money for her to go to a good mcf when I can't care for her anymore. I'm realizing my husband and I will need to move in sooner than we expected and that picture of caring for aging parents has turned into a frightening storm of worry and anxiety about making it work. and I'm realizing this is going to also have a huge impact on my marriage that is going through a rough time as it is. how will I do all of it?

Robert1320

I am in the same place as you are with my LO with Alz whose condition seems further advanced than your mother's.

Joining this group is a great first step. Reading the posts has helped to learn how to interact with my LO in a constructive, healthy way. You are also fortunate in contacting us early while there's time to start planning for the legal, financial and care issues that will come up.

In addition, my local Council on Aging has proved to be very helpful in addressing matters that require local knowledge, especially in supportinging caregivers, and on medical & legal matters which can vary in different places.

You can do this.

ronda b

Not everyone with alz. gets mean

. Every one is different. You need to read 36 hour . Each one progress at a different rate.

ARIL

Right: you can learn a lot about possibilities in disease progression, but each person is different. My father WD (now about stage 6) is still as kind as he ever was—to me, to caregivers, to his doctor. Other family WD were aggressive early on. It varies a lot.

Your feelings of worry are very familiar to people here, so you are among friends. You ask how you will do it all. You will do it all by doing one thing after another, learning new skills as you go along. I have done things in the past few years I could not have imagined five years ago. But you get through it.

As others have said, your Area Agency on Aging can be a great resource.

SDianeL

welcome. So sorry about your Mom’s diagnosis. Learn all you can about the disease so you can help her. Read the book “The 36 Hour Day” which was recommended by a nurse. Search online for dementia caregiving videos by Tam Cummings and Teepa Snow. Come here often for info and support. 💜

harshedbuzz

@GeorgiaJo

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I'm a little confused about a couple of things.

Is your dad still with your mom? Assuming he is, he physically capable currently?

You use the term "we" in terms of decision-making. Dementia decision-making can be far-reaching and have a tremendous impact on family relationships. Who is "we"? Was this pact to become mom's nurse a decision made between you and your DH? You and your dad, who maybe doesn't want to pay to have strangers in his home? Your sibling group, perhaps because you're the girl or available because you aren't working?

Some of what you are feeling right now is likely anticipatory grief. You're feeling the weight of mom's diagnosis in addition to all the losses yet to happen.

Related to the above, it is really hard to predict how the damage to the brain will impact the personality of a PWD. It's not a given than your mom will become aggressive or mean, especially if she's already in the moderate stages of the disease. Sometimes personality plays into behavior as the social filter is lost. Dad always had a nasty streak, dementia made it so more people got to see the real him. My aunt remained her easy-going and gentle self until the end as did my friend's mom.

You are wise to have a Plan B. Assuming your dad is still with you, it's important that you have the legal standing to make decisions— IMO both financial and medical— on behalf of both of them. If there are siblings, things can get dicey around decision-making so it's best one person has both. You don't want a scenario where one sib is looking to preserve assets to inherit while the caregiver sib is struggling.

As part of the Plan B, you and your dad should talk to an elder law attorney about Medicaid planning. Normally a person's assets are meant to be used for their care. In the case of a widow, the home would be sold to fund a MCF. If the spouse is living, they'd normally keep the house, and the estate would pay back Medicaid after the community spouses' death. If you are an adult child who has provided a level of care that kept your LO out of a facility funded by Medicaid for 2 years, you may stand to inherit the house if there is one. If you meet certain disability criteria, it might be possible to create a special needs trust for you. Every state has slightly different rules, so you need to consult a lawyer to understand your situation and state.

Caregiving is hard on even good marriages. You may be forced to make hard choices around this.

Good luck.
HB

H1235

Welcome. You have been given good advice. Not everyone with dementia gets angry, a plan B is very important (some facilities have a waiting list, Medicaid is complicated, start looking into it now), make sure legal matters are in order, learn all you can about dementia. I have attached some resources. Beyond this, you need to take care of yourself and your marriage! I avoided anxiety medication for a long time, but have finally started them. Talk with your doctor about your stress and anxiety, take walks, exercise, eat healthy. Try not to put too much pressure on yourself. You are going to make mistakes on this horrible journey, we all do. Life changes and things never seem to go as expected. If your original plan just doesn’t work be willing to pivot. Don’t try to make something work that’s just not going to. Do you have other siblings that might be able to step in and help? If you do end up moving in make it clear how much help you expect from them. You might want them to stay at the house x number of days each month so you and your husband can go out to dinner (that kind of thing). Or maybe you need them to do doctors appointments now and then. If you have no siblings, find in home care to give you and your husband a break. I hope something here helps.

DBAT.pdf

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/