Deaf Only Child, Struggles with guidance..

FearlessHeart21 · August 5

hello amazing caregivers,

This may be a long post, which I am typing as I think and go. Please bear with me as I do so.

mum was DX with vascular dementia on Presidents’ Day this year. Hubs and I suspected it longer than that, as she is stubborn to seek medical help. This is a tough situation and subject to share.

Mum created a wedge between herself and her family. Which I’ve been told that they wouldn’t help me because of what mum did and said over the years. My mum is divorced, so it’s just me, hubs and mum. My kid is adulting and all that fun stuff. Which makes it harder for me because I don’t even know where to go, I am in the dark and can’t see anything.

I did get some resources from my attorney, which is helpful, and more things are adding on to it. Trying to find someone to guide me thru this is almost impossible because resources for disabled caregivers are minimal provided. From my current experience. Mum is meeting with a geriatric doc in a couple of weeks, and I doubt she will guide me thru this as I am hoping she would. And their rules are ridiculously silly. 🙄

what am I after? Hubs thinks it’s time to put mum in a home. And I am on the fence of can it happen, should it happen, is it worth it? Or is the backlash gonna be heavily negative and influenced upon us? Here’s what we are seeing that sums up the possibility of sending her to a home:

Unstabled on her feet, we have seen her almost lose her balance a few times.
light headed often.
Not eating to pack the calories as RXed by her doctor (before switching her to the geriatric one).
Fearful of our alarm system and constantly asking when she can get out if needed or to answer the door (to strangers!)
Full on heavily relies on Depends.
Doesn’t have well control of her body and repetition of questions or very hateful negative statements.
Not sleeping like she should.
Fallen in the past and broke her shoulder - eh that wasn’t fun.
I can’t hear if the alarm goes off and mum wanders off. Hubs can, yes. If mum falls, I can’t pick her up because I have hip dyslexia to the max.
Mum is asking to be out more, thinks she has money and then freaks out that she thinks we are broke. She freaks out about being alone, or such.

Mum lately has been extremely obsessed with the news, good lord! She’s asking questions or making statements… she needs a GPS tracker, she needs a bracelet, very demanding. She had then starts looking into a home for herself and says oh I’m just looking but I’m not moving. She knows it’s round the time she might have to, but still…

I just don’t know what to do, where to go, or where to even start

what I have on hand:

Geriatric doctor

Attorney for Medicaid protection

Senior compass (maybe).

all of you 🥹 + hubs

what should I do? Please forgive me for the novel, just needs to lay it out there

thanks for all the support! 💜

H1235 · August 5

Do you have a DPOA? This is very important! If not, I would make this your number one priority. If you think your mom will be hesitant to sign, don’t bring up the dementia. Even tell her you and your husband are getting legal matters in order and suggest she should too. If you have the DPOA you should be able to sign whatever is needed to bring her to a facility. My mom has not signed anything. It sounds like she is living with you and your husband, which makes the decision to move her more of a personal one ( no judgement at all). If she is still living home alone I would think it is definitely time for a facility. Most here would probably recommend you not include her in the process of finding a place. We did take mom to visit the Al before we moved her, but I really don’t think it helped alleviate any of her anger. I would not have done it, my brother insisted. She found fault with everything. If you think she will give you a hard no! I’m not going, you might try some kind of excuse. There are plumbing problems in the house, termites, we are all going to move out for a bit. Husband and I are going… and we found this nice place for you. We just told mom she was moving, she would have never bought into a story. She was furious! Thankfully she didn’t refuse to get in the car and go. I would expect a lot of anger to be directed your way. It’s horrible, but you have to do what is best for her and you and your husband as well. Keep in mind that facilities can have a waiting list. They are also very expensive. Do you have all the finances figured out? In some states Medicaid will not cover assisted living. I hope this helps.

Anonymousjpl123 · August 5

I think the finances are key. Once we found out my mom needed a lot more help 4 years ago was really important for me to know what we were working with. The we could narrow down options. I’m not sure what Medicaid covers but I think no matter what you can eventually find placement. It just takes a lot of time.

Am I reading correctly that your mom lives with you? If so, you might also look into getting someone to come in a few times a week while you are figuring things out. Just that extra time for you can be key.

What I can say is 4 years in I realize it’s not the details/decisions that matter (keep at home, place in home, family support) but how much support the primary caregiver gets for themselves here. Most people on this board know that - so it’s GREAT that you found us!

start with the finances and power of attorney.
then figure out your options
no matter what, find support for you.

you will get lots of good advice here from people who have been there.

Anonymousjpl123 · August 5

P.S. are you deaf? Or your child? Just trying to think of what might be most helpful.

FearlessHeart21 · August 5

https://alzconnected.org/discussion/comment/249782#Comment_249782

I do! Thankfully mum set that up before her memory took a nose dive. I am her DPOA, hubs is the HA (health agent).

She lives with us, but the house is in her name to protect me from losing Medicaid. Found out the better news for that, being the disabled adult child, I am protecting the house 100% where Medicaid can’t come after me or mum for a lien or to take. (Confirmed by the Medicaid attorney). We were told that she would need to apply for Medicaid, and we have to pay the facility for 12 months out of pocket, once we after we begone month 13, mum’s Medicaid kicks in and we don’t pay for it anymore. **this is Utah’s Medicaid requirement). As for the fundings, we do have a good amount saved up to make it happen.

FearlessHeart21 · August 5

https://alzconnected.org/discussion/comment/249787#Comment_249787

I agree, finances are the key, for sure. We do have money set aside for her assist living arrangement.

Medicaid will kick in on the 13th month of mum staying in the faculty, and that’s when we stop paying it out of pocket.

It’s more so when should be the right time for Mum to be placed in a home, there are times where it’s impossible for me to help. I am not making time for myself or hubs or my kid. My health is great - according to my doc, but my stress levels are… sky high. I do have my breaking points where I have to hide in the bathroom and stay in there for hours just to soak and have peace.

Also, to answer your question, deaf or child or which. I am deaf, and adult, people label it as an adult disabled child. Not sure why but it’s been a said habit for long time.

I agree! I’m reading a lot and it’s helping in a way. Just trying to see where I can find what time frame we adult kids have to put our parents in a home, those kind of things. I’m glad I joined!

Thank you 💜

SDianeL · August 6

the important thing is for your Mom to be safe and well cared for. Memory care is locked so she won’t be able to leave and wander. She will have 24/7 care which is expensive and difficult to obtain at home. The common answer to when is it time to place them in memory care is that if you’re asking, then it’s time. Meanwhile ask for a referral to a geriatric psychiatrist for her. They can prescribe medications to control her anxiety and delusions.

harshedbuzz · August 6

@FearlessHeart21

I really want to reply as I have some family experience with deafness and caregiving for a challenging PWD. I have to take my DH for some medical testing this morning but should be able to circle back this evening.

Watch this space.

HB

harshedbuzz · August 6

Kudos to you for having engaged a Medicaid savvy lawyer to assist the family around this. This is huge, especially in your unique situation as an adult child with a disability as that applies to Medicaid.

At the end of the day, I think the care decisions for you mom are not all that different than what any family faces. The care needs to be appropriate to the needs of the PWD when they’re struggling most and not “on a good day”. It sounds as though your mom is fairly advanced in her disease progression; incontinence, falls and weight loss are late stage dementia symptoms.

My dad fixated and was confused by certain kinds of TV. He tended to think anything he saw was happening to him— mom’s crime shows, old weather disasters and news were all a problem. Since they had cable, I was able to use parental controls to make those channels inaccessible to him.

If she generally anxious and can be mean, medication might help her be less so. If her being mean trends into aggressiveness, you may find it difficult to place her or find a place that will keep her. Relieving anxiety before placement will increase the odds of a successful adjustment.

There are motion detection mats that deliver an “alarm” to a smartphone. The one my friend has vibrated and flashed lights. Doors can be secured, so long as your home with her, using simple locks placed above her sight line. As low tech as it seems, a simple black mat placed in front of door might be enough to keep her from approaching. That said, 24/7 care for a PWD who is has challenging behaviors and is an elopement risk is too much for a lot of people to handle in their homes. There’s a lot to be said for the kind of care provided by well trained and well rested professionals in a dementia-informed setting with failure-free programs.

HB

harshedbuzz · August 6

@FearlessHeart21

The other thing I wanted to add that may or may not apply in your situation.

My cousin, deaf from birth, was her mom's caregiver for years. Cousin communicated primarily using ASL (with professionals) and text/verbally with family stakeholders. I get a sense that she was often unable to express the sheer magnitude of the difficulties her mom presented. The ASL interpreters were a mixed bunch; it wasn't often that an interpreter understood how extreme the situation was for my cousin.

You said: Also, to answer your question, deaf or child or which. I am deaf, and adult, people label it as an adult disabled child. Not sure why but it’s been a said habit for long time.

This is language the SSA and CMS use to describe an adult with a disability who was diagnosed with that disability prior to age 22. There are certain programs and protections that treat such individuals differently than, say, an adult who became disabled after that age.

Good luck,
HB

terei · August 6

Please keep in mind that your (and husband’s)comfort and wellbeing are AT LEAST as important as your mother’s. She is placing a tremendous amount of stress on you both and it is increasing. If you can afford memory care, I think it is time to make the move. You are doing something FOR your mother, not TO her. She will have opportunities for socializing + 24/7 care that you cannot give on your own. Good luck

H1235 · August 6

I also felt Al gave mom some independence. She had her own mini apartment with her things and A little mini fridge with snacks. My mom also enjoyed having people her age to talk with. It really gave her a reason to get dressed in the morning and put on some lipstick. When living with my brother she would often lounge in her pajamas all day.

Deaf Only Child, Struggles with guidance..

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