Mother with early onset Alzheimer’s

lilizr

Hi everyone!
I’m here for support through this hard to wrap my head around diagnosis. My mother is only 62 and has been diagnosed with early onset Alzheimer’s. She has been living alone and has been doing ok as far as I know. She had been repeating herself but nothing else was alarming keeping her from living independently. I live out of state and came to help her recover from surgery. She got in a car accident and through the MRI, found a lump on her kidney that needed to be removed. I have noticed some strange behavior. She is peeing in bags and hiding them. She has always been a bit of a pack rat but it seems like she’s having a much harder time keeping up with tasks around the home. Bills are backed up, etc. I’m overwhelmed to say the least. I deep cleaned and organized. She got very upset at first but calmed down and appreciated what I did after a couple days. Her bills are up to date and I’m making sure she’s eating more as I don’t think she remembers to eat much. She never has been much of an eater as it was. My question for you all is, who do I call about assistance? I would like her to be able to live alone but know that she will need to be in assisted living sooner than we thought. I may also add she has a dog that she will not move without. My mother has very little money. Should I move in with her? Im sorry about this big rant.

Thank so much for your help
Lili
:/ :/ :( :/ :/

SusanB-dil

Hi Lili - welcome to 'here', but sorry for the reason. You are at the right place for support and advice (and even to go ahead and rant).

Yes, that is a difficult diagnosis for anyone to hear about their loved one.

First things - get paperwork in order - DPOA and HIPPA accesses are important.

Unfortunately, she should not be living on her own, considering one of the first indications is bills not up-to-date as well as the eating issue, then not to mention the other behaviors she is already exhibiting. Disappear the car. At least disable it if the accident hasn't done so, and you can tell her the part is on backorder. You can also call the ALZ line and ask for care assistance.

Would it be more practical for you if she moved to where you are?

forbarbara

Welcome to this online community which will be here for you throughout your journey. I am sorry you have to join us but glad you reached out.

My MIL ( mother in law) had a dog issue too. It caused her so much anxiety because she knew she’d eventually have to move and didn’t want to part with little Frankie. I was able to calm her anxiety by reassuring her that when the time came we’d find a place where she could take Frankie with her. That might help you in the short term. (When it was time to move she had to give him up because she’s in a secure MC facility. It was so hard for her but she did it. Don’t worry about that right now - just try to ease her anxiety about the dog.)

Your plate is very full! In addition to the Alzheimer’s hotline that SusanB suggested you might also try the local agency on aging - usually a county agency. And get the legal pieces in place ASAP. The hotline people can help you figure this out.

let us know how it goes, and take good care of yourself.

SDianeL

Welcome. So sorry about your Mom. I don't think she should be living alone. If she doesn't have much money, she may qualify for Medicaid. Medicare doesn't pay anything. Medicaid does if she qualifies. Call her doctor and see if they can refer her to a social worker or case worker. Write down ALL her behaviors and give them to the doctor. If she hasn't been seen by a Neurologist, get a referral there too. I would move her to a Memory Care facility maybe near you so you can visit and make sure she is cared for. Fib if you must. Her safety is your priority. As other have said, go to an attorney at get a DPOA immediately so you can handle her affairs and sign on her behalf. Please keep us posted.

M1

Welcome. CELA mentioned above is certified elder law attorney, and a list by location can be found at nelf.org. you definitely need power of attorney for her, and a CELA can also help you get her qualified for long-term Medicaid to cover the costs of institutional care. Do you live in the same state? You may want to start looking at memory care facilities that accept Medicaid near you, location won't matter to her so much but may matter to you a lot. Finding one that will accept the dog is a very long shot.

Urinating in bags is a sign of advanced dementia, she should definitely not be living alone, and unfortunately probably indicates that she needs memory care, not assisted living. Has she had her surgery? Because a way of handling this would be to have her go directly from the hospital or rehab to a facility, should you be able to find one. Sorry you are facing this, but you've come to the right place for support.

Iris L.

My suggestion is to rehome the dog unless another adult will be available DAILY to care for it. PWDs cannot care for an animal.

Iris

GothicGremlin

Hi @lilizr

So much good advice here. I'm in a similar boat as you - my sister was diagnosed with early onset, like your mom. She's just a couple of years older than your mom. I definitely agree that early onset can move more quickly than when someone is diagnosed after age 65. My sister was diagnosed in 2018, and has already been in memory care for two years. So yeah, get those legal ducks in a row.

And about animals ... I'd look for someone else to take care of the dog for your mom. My sister always had cats, and she thought she was taking care of the cat, but she wasn't. The "fiblet" I told her was that her veterinarian had her cat and was taking care of it for her. She accepted that. In reality I found a home for the cat.

CatsWithHandsAreTrouble

Hi, welcome as one can be in these trying times. My mom is also early onset, diagnosed at 70 but perhaps displaying symptoms as early as her 60s as well.

I'd like to stress with what others have said that is to not move closer to your mom and to rehome the dog.

Dementia is a very tough disease on the people who have it and those caring for them so you'll need to have a lot of support which would be difficult to get if you moved. If you move her closer, you can use the support that's currently around you that you're more familiar with (neighbors, coworkers, members in organizations you're a part of).

As sad as it is about the dog, it would be best to rehome. If she cannot take care of herself properly, there's little chance that the dog is. It can help your mom adjust to not having the dog around by getting a stand in to pretend it's her dog. Usually a stuffed animal can do well. Also as the disease progresses, having the added stress of caring for the dog could make things very complicated.

Definitely see about contacting a certified elder law attorney recommended from nelf.org to help figure out the costs of getting the care your mother needs. They are well worth the price for the ease of mind. They can also help find services that'll waive the costs of caring for your mom since you said finances are tight.