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My dad was diagnosed with dementia and has seemed to progress rapidly. Lately I believe it’s too much. I don’t know whether to hire sitters for him or if putting him in a memory care facility is what should be done. What all do sitters do? Versus a memory care facility?

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Idaholily,

How is it the business of a care facility how a family pays a private caregiver?
The caregiver or sitter a family hires privately is not an employee of the care facility.
It's none of their business how that person gets paid, how much they get paid, or if they get paid at all.
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It really depends on what type of care your father needs.

My MIL has 2 caregivers that stay with her 24/7 (they alternate days) since she wants to stay where she lives in Hawaii and that is how my BIL has arranged her care. They do everything for her. She has advanced Alzheimer's disease. A memory care facility in Hawaii could do the same thing in their facility, but she would have to share caregivers, deal with others' issues, and probably be more confused. If funds ran out, then she would need to go to a facility that accepts Medicare and Medicaid. Those are not is the nicer parts of town in Hawaii. So, she is better served with her 3 caregivers.

If you can find sitters that are qualified to do "everything," are trustworthy, and reliable... they are worth their weight in gold. I would probably go with an agency that has a policy of providing back-up sitters if the regular sitters can not come.
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Idaholily Jul 2022
How are you handling the payroll Taxes that may apply to hiring a individual. Most care facilities bring up the subject of having to handle payroll taxes correctly. Thanks
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Dadscaregiver86: Imho, your father is going to require managed care facility living in perhaps a Memory Care unit. You definitely do NOT want to opt for a "sitter," since the individual would not be medically trained in dementia, what happens if they call out 'sick?,' your father wanders the home at night and a myriad of other reasons not to opt for a sitter.
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May this serve as a friendly reminder not to try to live so much longer that we come down with worse diseases. We are 82 and 81, and we agree that if we should be diagnosed with cancer or something terminal, we won't seek treatment but seek to be released from having to face ALZ or something later in life.
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Maryjann Jul 2022
Please consider meeting with loved ones or spiritual advisors before you make any final decisions, though I totally understand.
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I am in your mom's position, caring for her husband who has dementia. I placed my husband of 57 years in Enhanced Assisted Living almost three weeks ago. My husband is thriving. He has a best buddy, a couple of "mother hens" watching over him, lots of activities, excellent food, and lots to talk about. I, on the other hand, fell apart physically after my husband's move. I had neglected my health so much that I was on the verge of physical collapse and have been recuperating since his placement. Living with him at the Assisted Living facility would have changed little for me and for him. I got Covid and tested positive for nine days. There was no way physically that I could have cared for my husband. I used in-home "caregivers" and Adult Day Health Care over the past two years. Both were utter failures. Placing my husband at a highly-rated AL and MC facility saved his life and mine.
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Speaking from experience, I'm not such a supporter of an AL when it comes to dementia because what usually ends up happening is a sitter has to be paid for in addition to what's already being paid out to the AL.
If your father's dementia is progressing fast, I think your best bet is to find a memory care facility to place him in.
Sitters can be unreliable. What happens if they don't show up? What's the back-up plan? Say you hire one, they work a couple days. Then they tell you that the position isn't right for them and they quit? What then? I've left many caregiving positions after only a couple of weeks and some even less when I knew I was not a good fit for a client.
There's pros and cons to both, but if his dementia is worsening fast, put him in memory care.
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So, to add to my original comment: your dad wanders all night long & acts hateful also. Which is part of dementia, yes. But you have a 14 y/o son who's witnessing all of this which is hurtful to BOTH of you. You need to consider a few things.

1. Is dad able to wander outside of the house at night while you all are sleeping? If so, he may just do that, get lost and then you'll have to call the police to find him. Install locks high up on the doors to the outside that he can't reach.

2. Is dad able to turn on the stove while wandering at night? Does he have access to chemicals under the sink that he can hurt himself with? Knobs need to come off the stove; chemicals need to be locked up.

3. Wandering around alone at night in a home is a dangerous event for an elder with dementia. He's further along than you realize. You saying it's 'too much' is accurate; you are out of your realm of experience, not just emotionally, but medically speaking.

4. Hiring in home help will not address the wandering at night issue unless you hire overnight caregivers. Do you plan to do that? Your mother cannot physically stay up all night to look after dad while he wanders. #Truth

5. Exposing your teenage son to this type of behavior from his grandfather all the time can have a negative effect on him which means he can wind up acting out, getting poor grades in school, leaving home sooner rather than later, doing things he shouldn't be doing in an effort to escape his traumatic home life. You need to take that into consideration b/c your prime focus needs to be your son, not your dad.

6. As dad's dementia continues to progress, everyone will have to consider Memory Care if/when the danger becomes too great at home.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 

https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4

Learn all you can about what dementia is all about and how it affects the WHOLE FAMILY.

Wishing you the best of luck getting dad the help he needs. Sending you a hug and a prayer for peace.
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BurntCaregiver Jul 2022
No. They will not need to start removing knobs off the stove and baby-proofing the house.
Put a lock on the outside of his bedroom door and lock him in at night so there's no wandering.
Have the doctor prescribe a sleeping medication or a hypnotic to keep him from getting agitated or wandering.
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My dad and stepmom lived in AL. Both had Dementia. My stepmom passed September 2020 and my dad couldn't be alone...he'd panic. I hired caregivers to help him out with his anxiety of being alone. He was considered "too active" for Memory Care and I was told he would disrupt the other residents. Keep in mind...anytime there's a Covid outbreak they go on lockdown and family is not allowed in! This happened twice while my dad lived there and it's horrible. You can go through an agency for a caregiver. They are screened, insured, etc. It's costly but can also be used as a tax deduction.
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Maryjann Jul 2022
We had 24/7 care through an agency for my FIL when he was on hospice. It was over $20,000 a month until we found a group home for him. What drove the price up was the agency said it was REALLY hard to cover three 8-hour shifts and so there were tons of overtime that had to be paid because they would sometimes have 2 people who each worked 12 hours. It was unreal.
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Sitters give personal care. This allows you to work or at least get out of the house.
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Thank y’all for the insight I do believe for the time being a caregiver is what my mom has chosen. My 14 year old and I live with them but I’m coming to find out that I can’t do it all by myself. He wonders all around the house at night and is sometimes down right hateful which is nothing like the dad I knew. I knew dementia was extremely difficult I guess I just thought that’ I’d handle it better than I feel I am. I feel like I’m failing at everything with him. My mom is struggling emotionally and I feel like failing her to cause I can’t “fix it”. He looks “normal” so we don’t see him as sick but he is and it’s so hard sometimes. He and I were buddies when I was growing up and lately it seems like he hates me. And I know it’s the dementia it’s not really him but it’s still hurtful
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Beatty Jul 2022
Remind yourself kindly:

You didn't cause Dad's Dementia or Mom's aging issues. You can't cure these issues either.

You CAN however be a comfort & help arrange the care they need.

As a side issue, your son is watching - how you support your folks, but also care for him & yourself too!

Sometimes I felt I took my eyes of my teens while helping other family members.. 😔 Although very independent - they still really needed me.

Good luck with your decision.. I am wondering if you could try sitters (as plan A) then MC (as plan B) if/when needed?
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The $64,000 question is, what does mom want? How does she feel about her husband moving out of the house and into a Memory Care ALF? I know I couldn't separate my folks, dad would've been miserable without mom. So I moved both of them into Assisted Living where they could live together in the same apartment. Your dad may be too far along with his dementia to qualify for regular Assisted Living, however, I don't know. If so, you can find an AL that also has Memory Care attached. Mom lives in regular AL and dad in Memory Care so they can visit daily. Just a thought, if the finances will support such a thing.

You don't want a "sitter" for dad if he stays home, but a caregiver who's versed in dementia care. Someone who can help bathe him, stimulate him with simple games as they do in Memory Care Assisted Living, and take him for walks, etc. You don't want to pay someone to sit there on her phone and babysit the man! Dementia is a complicated condition and it's important to find a person who is familiar with it to help your folks. Someone who can help mom cook, prep meals and even run errands and clean would likely be helpful for both of your parents.

Good luck to you and your parents.
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BurntCaregiver Jul 2022
A caregiver like that will be expensive and they rarely come out of an agency.
If the father is aggessive and abusive, it's not likely they will stick around.
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How about in between options.
There are Adult Day programs. Less expensive than hiring a sitter and a lot less expensive than Memory Care. Most pick up in the am and drop off in the pm. Provide breakfast and lunch and a snack.

As to the "sitters" it depends on what they have to do. Are they just sitting to make sure he does not wander off, playing some games or keeping him busy? Are they changing his briefs(aka "diaper)? At that point I think you are looking at "Caregiver" not just a "sitter"

How is your mom at "controlling or redirecting" dad? If he wanted to change a lightbulb would he go get a ladder and try changing the bulb? Could mom stop him? If he wanted to drive into town could mom stop him? If dad is doing things that are unsafe it might be time to look into Memory Care.
As you have seen some progression is rapid and it may not be safe at home. Are there stairs? Wide halls, wide doors? Large bathroom that more than 2 people can be in at a time with a walker or wheelchair?
Are either of them aware enough that you can discuss these potential problems with them now?
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A sitter usually……sits. They are there to make sure the patient isn’t left alone. They might change the TV channel. Toileting isn’t usually part of the deal but might be if they only have to walk them to the bathroom. Driving them….usually no. They are sitters. Like a babysitter who watches kids and is basically there to make sure they get them out of the house if it catches on fire.
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It depends on what you hire people TO do, what they do. If you are going through an agency the answer is likely not a lot. They will fix a simple meal, do "light" housekeeping, and can sometimes drive to appointments or shopping (usually an extra cost). You are looking at about 30.00 an hour and I can't imagine anyone affording this for 24/7 care, myself, for very long. On the other hand, dependent on where you are, Memory Care is also very costly. They may or may not have transit to appointments, and don't accompany the person to appointments and tests, etc. I think you should explore options for your area. For someone who needs 24/7 care my personal vote for reliability and safety is memory care. What would you do if a sitter simply doesn't show up? What about insurance for any employee injuries on Dad's property, and etc? This is definitely not an easy choice, and much depends on assets, where you live, and etc.
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