Hired companions to supplement MC.

Hwright · November 1

I’m new here. I started writing a long backstory and decided to cut it down to the immediate situation.

Mom has been in MC for about a year after being diagnosed with dementia. She went from living independently and walking regularly to MC in a matter of weeks. She has been unhappy depressed and angry about her situation. She does not acknowledge her diagnosis and feels she is being unjustly imprisoned.

She had friends who would come take her for walks when they could.

Recent suicidal ideations made the staff nervous and they have restricted her ability to be escorted out of the building unaccompanied by facility staff. Talking with her care team they don’t see these restrictions being lifted. They came out and said that they don’t see themselves as the right fit and would help me find a more appropriate facility. I’ll post about that seperately.

What I am looking for right now is advice on hired companions.

Are there orgs that we could hire to have someone to take her for walks or the store etc? It would have to be someone the home would feel comfortable to assume liability for her. Are they expensive? She is on social security and Medicaid.

I am her only “local” relative but still a couple hours away and as guardian the only person they will allow to take her out. WOW that was still long.

April23 · November 1

There are certainly agencies that provide paid aides/caregivers. In my area they are around $35-40/hr with a four-hour minimum.

SDianeL · November 2

welcome. Sorry about your Mom. Some info that may help: The reason your Mom is not acknowledging her illness is called Anosognosia which is a neurological condition that causes people to lack awareness or insight into their own mental health condition. The term comes from Greek and means "to not know a disease". A notable symptom is a lack of understanding, acceptance, or awareness of one's condition, even in the face of clear evidence. So your Mom will never be able to understand she has memory loss. Is your Mom on medications for anxiety and depression? If not I would speak to the doctor. If so, perhaps the meds need to be adjusted. If your Mom is in a locked MC facility perhaps taking her out is causing her more anxiety when she returns. Many caregivers choose not to take loved ones out for that reason. There are agencies where you can hire someone but they are usually CNAs and some aren’t allowed to drive the PWD anywhere. You would need to ask that specific question. Caregivers are very expensive and usually have a minimum number of hours. So if they charge $40 per hour and have a 4 hr minimum you would be looking at $160 weekly or $640 per month if they came once a week. Medicaid won’t cover it.

harshedbuzz · November 2

@Hwright

Many of the residents at dad's MCF had private aides who visited. Some almost every day and some less often. Many had previously been their caregiver when then PWD was still living alone or with family. Some were agency aides, and a few had been direct hires by the family via word-of-mouth or care.com. Agency aides here are ~$40/hour, 4 hour minimum, 15 hours/week. There may be special consideration if the aide is driving their vehicle (extra cost) or yours (check with your agent).

If her friends are no longer visiting regularly, it would make sense to move her closer to where you live. Your involvement in terms of hands-on caregiving will increase as the disease progresses. IMO, you need to be able to meet her at the ED when she arrives from the MCF as the facility will send her by herself.

Be aware that most PWD live in the moment. Even if she was getting out several times a week, she might not recall the outings or benefit from the efforts others are making for this to happen. Sometimes happiness is beyond what you can achieve as a caregiver.

HB

ESkayP · November 2

I'm considering a private care company the hospice organization suggested. It's odd that an MC facility with 24/7 staff and hospice care who visit five times a week are not enough. Mom is mostly bedridden now, but she keeps working her way to the edge and tries to stand. I understand that the facility must record every incident of falling. Even if Mom just slid down or eased down, any time a resident ends up on the floor unobserved, they have to qualify it as a fall. Those incidents are marks against them. I didn't know that before. No wonder they were so concerned. Of course, they want my Mom to be safe, but they can't ignore the business end of things. I can't afford to take FMLA without pay, and I have no family who is willing/able to just sit with Mom watching her sleep and alerting the staff if she should happen to try to wiggle away. The private care company is used to working at this particular facility, and their hourly rate is on the lower end. It will have to come out of pocket. I think I would be afraid to allow someone to take my LO to the store or to drive them anywhere. It's one thing to have someone come over to help with light house work and to help with showering or companionship. It's another to vet them for transportation needs. I wish there were more options for all of us. No one is prepared to care for our LOs when this disease progresses, no matter the stage. Every step feels so complicated even now that my mom is nearing the end.

Hwright · November 2

https://alzconnected.org/discussion/comment/257485#Comment_257485

thanks. She also has a lifelong distrust of the medical profession. She refuses all medications, so meds are out. I hate to know that fresh air and exercise are effective complementary treatments for depression.

harshedbuzz · November 3

Who is her legal medical decision maker?

It's clear she is suffering emotionally without the cognitive bandwidth to use non-medical approaches to her discomfort. Would it be possible to hide medication? Some meds can be hidden in a preferred food like ice cream, pudding, Ensure, or apple sauce if she'll reliably finish it.

Victoriaredux · November 3

Is it possible the outside visits and trips to the store are more for you to feel things aren't at the level they are . Most PWD tend to stay at the memory care facility 24/7 because it is better for their calmness and stress to not be facing changes of scenery.

It's hard to not have "bragging rights" when someone asks "how's Mom?" and not have a positive to rely but reality is it is a progressive fatal disease with their world getting smaller and smaller .

"She refuses all medications, so meds are out." If you are her legally appointed guardian review the documents - it maybe your call - with medical advise about her care-not hers. Meds could give her comfort.

You are several hours a way- you may want to visit and watch her for a few full days in a row to get a better feel for her condition. If her current home is saying they aren't a good fit- you'll have trouble getting her placed without addressing the concerns they have- they'll go with her . There are no cures or quick fixes- deferring to Mom's old choices of no meds may leave her in mental pain. I''m sorry.

Hwright · November 4

https://alzconnected.org/discussion/comment/257572#Comment_257572

thanks for the frank talk.
I will have to talk with the staff about hidden meds.
My desire for walking is that she has a couple friends who would come and walk with her. And she could walk for miles.
I was also about to pay a local friend of a friend to come and walk with her under the table but now that is out.

Thanks again

CaliforniaGirl-1 · November 4

https://alzconnected.org/discussion/comment/257571#Comment_257571

https://alzconnected.org/discussion/comment/257572#Comment_257572

Even if someone is not competent many facilities and some states will not allow them to be medicated without their consent unless there has been a court ruling (danger to themselves or others). Hiding medication in food falls into that category. Being the medical decision maker allows you to refuse for them but not to override their lack of consent at, least in my state.

I write this as someone whose LO, at earlier stages occasionally refused to take even necessary daily medication that they had been taking for years. And then because of the dementia would forget that they had had the nurses review what they were with them.

All I can say is like every phase of this dreadful disease this too shall pass.

Hired companions to supplement MC.

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