Mother is losing it, I'm 24, only child, and live in another state. Terrified.

Nebula

Hello! I'm new here and looking to learn and hear from your experiences so I don't feel so alone in all of this. 

So, my mother and I aren't very close. Even though we are civil around each other, I didn't ever imagine a situation where this was going to be her future and I had to be the person to take care of her. 

My mother has started losing her memory at about what stage 4 dementia should be after doing some research. She has always been forgetful, (as she also has MS,) and I wasn't really concerned at the beginning because I hear crazy stories all the time about her memory.

but now, some of her relatives and friends are aware that her condition is worsening (very quickly) and have communicated to me that they are afraid for her welfare.

She is forgetting names, faces, things that we have talked about recently, but most importantly anything concerning technology has flown out the window. She calls me often asking me how to check her emails. She also forgets when she ate, when she fed the dogs, I found out that she has absurd spending habits and insane debt, and that she calls random people (and I mean random, like the realtor,) to help her fix her car and even to unlock her front door on occasion because she forgot her keys. etc. 

It's a dangerous game, and I'm pretty positive that this is more than MS. I took her to her doctor during a visit 2 months ago to get her settled, and her MS is stable. They haven't diagnosed her with anything more as she's still able to function as a person and do average things. 

It sucks that I worked so hard to get away from my life there, and now it's almost like she is finally getting what she has always wanted; to be my problem. 

I know that that's a shallow, selfish way of looking at things, but I grew up around her toxic manipulative behavior and would much rather she go to someone else for help. She is an impossible person to help and to care about, and now it's 100% worse because of her sickness. 

Alas, I do still care about her, and I do still love her, even though it's so, so hard for me to do. It's a weird feeling, like I feel so much guilt even though I know I shouldn't. It's why I'm on this page today, I can't just leave her there.

So far, I have managed to help her finalize listing her house for sale, I have DPOA, and I am currently in the process of approving a job hardship transfer to move down to CO temporarily while I sort this all out. We started the process of looking at 55+ communities, assisted living, and have gotten her a temporary nurse that comes over once a week to check her blood pressure and medications. I am absolutely stressed.

Now some questions: How did any of you in the same situation work through being in other states? Did you become their caretaker, put them in senior care, etc? How are you coping with it all and adjusting to it? Financially, am I able to have her senior Medicare take care of payments?

Thank you for listening. This has been the craziest 4 months of my life, and I just want her to be safe. In fact, I had to find out on my birthday. 

I worry about her endlessly even though she wasn't there for me when I needed her. It's absolutely terrible.

SusanB-dil

Hi Nebula - Welcome to 'here', but sorry for the reason.

So sorry you are dealing with all of this. My mother and I were never close, either. Fortunately for me, my brother has POA for her and I just give support as I can. So I totally understand that scenario. Unfortunately, sorry, as I know that you do not have that option. We are caring for MIL.  I know you will hear from others, but do know you are not alone. We are here because we are all just doing the best we can with what we've got (or been dealt).   I would not say it is selfish of you in not wanting the total responsibility of it all.  Self-preservation is important.  I would not be able to do for my mother what my brother can... and yes, I do care about my mom, too. And I understand - because at times I really needed, I took care of myself.

When you do go to her place - A couple things that come to mind - hopefully, she is not driving.  Another is that it is not impossible, but really, really difficult to manage things from a distance.  When you can move her, please look at options near you, instead of you having to rearrange your life.  Also - the food issue.  There needs to be something in place for her to be eating healthy, and that expired foods are not in the cabinet or fridge.  Might need to check on the welfare of the dogs as well. Is she over or under-feeding them, and with the appropriate food?

And check on finances - since you have DPOA, do check that bills are getting paid, and that she is not letting scammers have anything.  HIPAA - you can check with her doctors for any medical matters.  Do be aware that some of our LO can 'showtime', so during an office visit, things don't appear as bad as they really are. Document incidents! to share with her doc.

Do check out the solutions tab above - and archives for various subjects.

Another way we deal with issues is fiblets. Whatever works.  When you do get ready to move her - you could tell her that "found an issue with plumbing or foundation or the roof, so you will need to be 'other place' temporarily".

Quilting brings calm

The least disruptive thing long term for you is to move her into an assisted living place close to you. Close being 45 minutes away or less.  This will allow you to continue your life as best you can and know she is safe and secure.    My mom started her dementia journey 800 mikes away from me and that part of it was brutal until we got them moved. I couldn’t have continued trying to do it long  distance.  Nor could I care for them in our home.   I come from an abusive dysfunctional childhood also.  I’m much older than you, but the feelings are still there. Assisted living is what’s best for us.

Medicare does not pay for long term care.  Depending on the state in question, Medicaid might pay for some of the costs of assisted living- if you can find an assisted living place that accepts it.  Medicaid can be used for nursing homes when the time comes.  Consult the department of aging in her state and also in yours.  Also consult a elder care attorney  

Beauchene105

Nebula, I always feel a kinship with other onlies. Every situation is different and what is difficult or impossible for one person is workable for another, and vice versa. In my case, my mom is 3 1/2 hours away, but she loves her hometown, where I grew up as well. It was hard enough to get her on board with the AL arrangement in her town, and I can't even imagine how she would have dealt with a major move. I cannot and would not want to move myself, either. So this has worked out best for the both of us. She is well-looked-after at her AL, along with having daytime sitters as required for her level of care. She is on a fixed income so of course I as POA carefully manage every penny. I make a trip there every other week. Since I don't know how far away you are talking about, I don't know if this type arrangement is feasible for you or not. You have to do what you feel is best for you and her.

 If you get her into an AL or MC and are at any distance, I recommend having resources there in place so that if she falls or is taken to the ER, there are persons who can be there until you get there. It's also very helpful to be on close terms with not only the sitters but the caregivers, staff nurses, and her PCP. Make use of any online resources you can such as automatic bill paying and drafting.

All this is super stressful, no matter what. Do whatever is necessary to keep yourself sane!

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CanyonGal

I am having to care for a parent in another state 1500 miles between us. It is very difficult but we have been managing with lots of road trips living in a travel trailer. My husband and I have been on this merry-go-round for the last 3 1/2 years. My sister who lived within 30 miles of her decided she didn't want to do it and everything was dumped in my lap to figure out. Long story short, it is a very dysfunctional family.

Financial: You need to quickly figure out her financial status, and whether she qualifies for any government or state assistance. Does she have any VA benefits? Get a ballpark figure on what she can afford. Medicare does NOT pay for long term care.There is a FREE finance course on the Alzheimer's Association website.

Financial & Legal Planning | Alzheimer's Association

Paying for Long-Term Care | National Institute on Aging (nih.gov)

Diagnosis of Dementia

 Her Primary Care Physician should have someone in the office that can do the mini-mental state examination (MMSE)to get you a baseline of where she is and the doctor should be able to point you in a direction of someone to do the screening of her cognitive impairment. (When my mother was in rehab, they had several therapists who were qualified to do the testing so I had a "professional" who could report the dementia stage she was currently at. People thought she wasn't surely that bad, or couldn't have dementia, until she was tested.) You might hear she is at the level "MCI" which is a way of stating she is at the beginning of dementia, but functional, even if doing crazy things, showing faulty judgement. (My mother was MCI for years before the MMSE screening tool started showing her in the moderate range.)

Visit lots of Assisted Living facilities and they will give you information on costs.  (I don't think the 55+ community is a good solution because you will eventually have to move her again - just my opinion.)

There was a waiting period before I could move my mother into Assisted Living. We hired a part time caregiver to come in for several hours a week to help mom. She was a lifesaver in that she help organizer and did the bathing routine as I was afraid of her falling in the tub. Ask your mother's friends if they "know" someone who could help during the week and has reasonable rates. At least you have a nurse checking on her weekly.

JOIN A VIRTUAL SUPPORT GROUP

 There are virtual caregiving support groups that meet through Zoom and the people in the group can be very helpful. Support Groups | Alzheimer's Association

And last, it is OKAY to feel that you don't really want this responsibility. Remove the guilt for wanting your own life. Take it one day at a time and things will eventually fall (somewhat) into place. Give yourself a pat on the back for trying to assist your mom. Good luck!