All new to me(1)

3GKS

My mom passed away 12/2/20, I moved my dad and his two pets in with my husband and I 2 days before Christmas. It did not take long to realize something was not right with dad. Yesterday we got the answers to our many questions; dad has dementia caused by moderate Alzheimer's. Now it all makes sense. I have no idea what his life expectancy is, but I do want to know so I can plan and prepare financially. 

The 36-hour Day book is arriving today and I've been reading a lot of the posts on this site which I've found comforting and terrifying at the same time. Doctor told me to come up with a plan B and C, and to start thinking about 24/7 care. 

I want to keep dad home with us for as long as possible, so the burning question for me right now is around live-in care. What does that look like? Is it any caregiver I hire that lives in a room in my house? And what/how is the pay? Free rent + salary? And do I need to have a secondary caregiver as backup? I imagine even a live-in caregiver cannot be with my dad 24/7 though, so do you assign them particular hours they must be in the house?

Right now I have a caregiver that comes in 4 hours a day Mon - Fri while I work from home and am able to supervise him as well. I do plan to go back into the office a couple days a week for my own sanity though

Any advise is appreciated. 

May flowers

Glad you found this board, but sorry for the reasons that brought you here. I like the 36 hour book, it has been very helpful to prepare for what to expect. My FIL was diagnosed with vascular dementia in 2015 and was showing signs earlier than that. He just moved into memory care but is still fairly functional (at least with his daily activities), his short term memory is gone, though.

We moved him in with us last summer and it was definitely a full time job except, thankfully, he slept at night. We opted for the memory care recently rather than caregiver just due to my FIL’s personality.

We had a 24/7 caregiver for a period of time for my MIL when she had cancer. What we did was find a small agency and they provided the caregivers (CNAs) - two of them who switched off - every other week. We did the grocery shopping and they cooked for the person they cared for and provided bathing, toileting, grooming, checking vitals for my MIL, and driving her on outings and trips to the doctor. In our case, it was a mother-daughter team and they were wonderful. They did not have to provide meals for my FIL, but they did anyway. In our case, they did not stay in the same room all the time because dementia was not involved and constant supervision was not needed and my in laws liked some privacy, but they did check on them regularly. So, it may be different when dementia is involved.

They lived in a room in our house and made it their own, they had their own tv, etc. They used a baby monitor overnight. 

 Since we used an agency, it was not divided up by room/board and care, it was a set fee of $8000 a month. I’m sure there are more expensive and less expensive options and probably different costs by states. Anyway, that’s what our in-laws could swing for a few months. We don’t think it would have been doable for years though. My MIL loved her caregivers, my FIL did not like having another person in the house - he was always uncomfortable with it. 

Quilting brings calm

Reading ( or skipping around in) that book will be very helpful for you.  I’m not sure what stage your dad is in and what his symptoms are, so some of this may not apply. 

First thing for you to do is to get legal and financial paperwork done so you can help your dad with stuff.  Go to your states department on aging website.  Print off a power of attorney and a medical power of attorney form. When he is having a good day, take them ( unsigned)  and him to a notary public and get it signed.   He has to be able to keep it together enough to show  that these are his wishes and he understands he’s giving you financial access, etc.

Have him add you to his bank account so you can write checks for him. 

You need to investigate some assisted living and memory care places so that you have an option if keeping him at home doesn’t work out.  Figure out your limitations as to having him at home.  Figure out your husbands limitations.  Read these forums.  Look up a couple Facebook dementia groups too,  join one.  

Glad you found us. 

abc123

Hello 3G and welcome to the family! This is a diverse group of folks but we are all on the same journey. We care about and support each other as best we can. Feel free to ask any and all questions and also come here to vent and rant if need be. 

I’m sorry about the loss of your Mom. Please accept my condolences.  It sounds like y’all have a good doctor! Back up plans are always high on everyone’s list. You’ll get wise advice/suggestions on this topic! Good luck.

towhee

3G, Hi. What 24 hour care looks like varies by state, as each states' employment laws are different. Caregiver agencies have to abide by state law, so ask your agency what this would look like. Some states only allow a person to work one 12 hour shift in 24 hours. Others limit it to 8 hour shifts. Some will allow one person to work 24 hours if their "patient" sleeps at least 6 hours without waking. Persons with dementia will often develop irregular sleep schedules, some waking an average of every two hours. Nobody can handle that for very long.

Hiring privately might be different, but even so, the caregiver needs to be relieved by either other paid staff or family members at least one day a week, preferably two. You also have to do background checks and pay all relevant taxes and social security. 

Free Rent--this is not as much of an incentive as you would think. Because caregiving for an older person is unpredictable, ie. there might be 1- 2 weeks between long term jobs, an older person can go from home to hospital to long term care in a couple weeks, and then the caregiver is out of a job, most caregivers maintain a home, either with family or roommates. You really want someone with experience and training. Getting and keeping reliable care is a challenge, and you might end up using a mix of family, private, and agency care.

No matter how you slice it, 24 hour home care is very expensive. Usually when the point is reached that you need 24 hour care for any length of time, a person with dementia is placed. Placement is almost always cheaper than 24 hour home care. Usually when a doctor says 24 hour care they are referring to either family care or placement.

You have to consider the persons' resources and income. You don't want to spend everything on home care and have nothing left for placement, because then you have no choice in where the person goes.

Many people have stretched the amount of time a person spends at home by using Adult Day Cares. These can be very beneficial for the person with dementia and are often cheaper than in home care. Some of these are opening back up now. You could try contacting your local Alzheimers association or area agency on aging for a list of these.

towhee

Oops, forgot part of your question-How long will your LO live- Alzheimers is unpredictable, each person is different, but there are averages. From time of diagnosis it is usually 10 to 12 years. Most people are diagnosed at the end of the mild stage or the beginning of the moderate stage. You also have to consider their age and other medical conditions. Most people try to plan for 2-3 years of AL/MC and 1-2 years of skilled care. 

I second getting that DPOA and HCPOA, also HIPPA release for other family members involved in his care, and looking at advance directives while he still might be able to express his wishes. 

It is a lot, just take one step at the time.

ButterflyWings

I'm sorry for the loss of your mom, and current losses of your dad. What a Christmas gift, right? We know what you are going through, and what is ahead. Glad you found this forum.

This is the best article I read, and I have shared it many times. This information, and advice to see an Elder Care atty quickly, are the fist things I would recommend to anyone walking this dementia road we are on. Wishing you and your husband the best as you navigate this.

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

harshedbuzz

3GKS wrote:

My mom passed away 12/2/20, I moved my dad and his two pets in with my husband and I 2 days before Christmas. It did not take long to realize something was not right with dad. Yesterday we got the answers to our many questions; dad has dementia caused by moderate Alzheimer's. Now it all makes sense. I have no idea what his life expectancy is, but I do want to know so I can plan and prepare financially. 

I'm sorry for the loss of your mother and also for the situation in which you find yourself thrown with little warning or preparation. 

Nobody can give you a sense of life expectancy unless your father has some other terminal illness which has a somewhat predictable course. Alzheimer's can take 10, 15 or even 20 years to progress to end stage. 

Most doctors speak in a 3 stage model, where most families use a more nuanced 7 stage model of disease progression. This one gives a sense of the typical lengths of each stage; stages are on the left of the screen. When my dad had dementia, I knew 4 people with it who have since passed. My dad was diagnosed in midstages in late 2016 and died in spring of 2018; he had mixed dementia, was older and seemed to have physical manifestations ahead of loss of skills. He developed aspiration when he still knew close family and was quite verbal. My aunt had VD and "fell off a cliff" after breaking a hip in midstages; she died about a year after her diagnosis. My other aunt showed signs as early as 2000, was diagnosed in 2003. She progressed slowly and died just before my dad in 2018. A dear friend's mom also had Alzheimer's at the time. She was diagnosed in mid stages and lived about 4 years into her mid-90s succumbing to a combination of untreated breast cancer and dementia. 

Stages of Dementia Dr. Tam Cummings

 

The 36-hour Day book is arriving today and I've been reading a lot of the posts on this site which I've found comforting and terrifying at the same time. Doctor told me to come up with a plan B and C, and to start thinking about 24/7 care. 

That's a great book. I also like this quick read for understanding how dementia impacts your LO which makes it easier to respond to their emotional needs. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

I want to keep dad home with us for as long as possible, so the burning question for me right now is around live-in care. What does that look like?

For most families, live in care is what you see in the mirror with the help of your husband and any children still at home. If you are lucky, you have siblings and in-laws who provide respite so you and your husband can have dinner out weekly and maybe a weekend off to celebrate your anniversary. 

Another option would be to have dad attend a day program for PWD- these typically run 9-3ish and provide care, socialization, lunch and snacks. Sometimes these are offered at MCFs which can be more flexible in the hours which can allow their adult children to work fulltime. There's an elder care program near me that works on a daycare model; they're open 6-6 and provide the usual services plus showers, salon/barber services, a visiting podiatrist for an additional fee. It's great for those who must work, but I imagine it's a long day for someone with more advanced dementia.

There is an option to bring in a live-in caregiver, but it is a very complicated. My neighbor has done this twice- for his estranged first wife with MS and for his second wife's mother with Alzheimer's. 

Ideally, you'll need an Elder Law Attorney to advise you on the laws in your state and to draw up contracts. You'll probably want a CPS to advise you on tax implications- payroll taxes, etc. And you'll want to check with your insurance agent about providing additional coverage for people working in your home. You'll probably need an additional rider and workmens comp coverage.

Is it any caregiver I hire that lives in a room in my house?

That's for a professional to determine.

And what/how is the pay?

It can be all over the place depending on the skill level of the caregiver, where you live, etc. Agency help generally works 8 hours shifts for about $30/hour; privately contracted could be less but you handle all the vetting, payroll and covering missed shifted.

 Free rent + salary?

"Free rent" isn't so much a perk for most professional caregivers who work with PWD. My neighbor's MS caregiver did live-in with her husband at her assignments, but she worked for clients with physical disabilities exclusively and for many years at a time, so a house of her own didn't make sense. His Alzheimer's caregiver worked memory care exclusively and went home to her own place on days off. Having her own room there was convenient for overnights, but she didn't want or need to be at her place of employment when not working. 

And do I need to have a secondary caregiver as backup?

Probably, unless that would be you. Often families who work fulltime, have a day person M-F and perhaps a couple weekend people so they can get errands done and have some semblance of a social life. Some states restrict shifts to 8 hours or require OT pay. 

A couple of caveats. 

1. In bringing a live-in aboard, you are effectively turning your home into a 1 bed nursing home and that might not be comfortable for you and your family. 

2. In scheduling shifts, the more popular caregivers get pick of the shifts and tend to gravitate to gigs that offer more hours. You may find the evening and weekend people especially harder to come by unless you are offering close to 40 hours. 

3. This is hella expensive, if dad's assets are not infinite, it would be more prudent to find a nice MCF that would allow a transfer to Medicaid when he runs out of money. 

I imagine even a live-in caregiver cannot be with my dad 24/7 though, so do you assign them particular hours they must be in the house?

Yes, there need to be clear expectations and you need to be mindful of the hours actually worked lest you be slammed with a request for OT.

Right now I have a caregiver that comes in 4 hours a day Mon - Fri while I work from home and am able to supervise him as well. I do plan to go back into the office a couple days a week for my own sanity though  

Perhaps for now, expanding the caregiving to cover the entire workday would be enough especially if you and your husband could stagger your start times. Or you could look into a day program to cover some of that time.

That said, not all people with dementia are "easy" and not all of us are cut out to be caregivers. 

There's a lot to be said for a quality MCF earlier in the disease progression while he could enjoy some companionship and activities and where his caregivers could really get to know him. This would allow you to go back to just being his daughter. 

Any advise is appreciated. 

aod326

Hi. What a hard few months for you and your family. You sound as if you're doing a lot of great research, and it's a great idea to have Plan B and C! I have had recent experience both of MC and live-in carer.  I placed DH into MC August 2020 and decided to bring him home at the end of January this year. Lots of reasons, but I'll stick to your questions! When I'd researched options before MC, I couldn't stand the idea of someone else living in the house. I thought it would be really weird. When he was coming home in January, I had no choice - a live-in carer is about half the price of 2 x 12 hour shifts, in NJ anyway. The cost of live-in was about the same as MC, $8,100/month, although the extra cost of food, laundry etc, put the overall cost at slightly higher. (By comparison, hourly paid are $25-30/hour.)

I used an agency and interviewed the person before she came. In fact I interviewed three agencies before I finally selected one. Ultimately it comes down to who the carer themselves, not the agency, but I had a bad experience with an agency who provided additional care for DH when he was first in MC.  Personally I would not consider hiring someone privately unless I had a solid recommendation, or I knew them personally - I want to know the person is thoroughly background checked, trained etc.  Also, using an agency means you have a back up at all times. Without doubt you would pay less if you didn't use an agency, so pro's/con's.

I also wfh, although I took family leave when he came home because I knew he didn't have long. (He died 4 weeks ago.)

I was very nervous before she arrived, which was also the day DH came back from MC. But it worked out wonderfully. She was so kind and patient with DH - the most important thing - but it was lovely for me to have someone too! I knew before she came that she would have to be out for one week, and the agency sent a replacement. First replacement was awful, so was replaced!! So, it does come down to the individual. 

She stayed in our guest room and had the hall bath to herself. In NJ the law is that the caregiver has at least 8 hours uninterrupted sleep, plus uninterrupted time for meals. DH slept through the night, but she would get up a couple of times to check on him. (I had the baby monitor.) I think most people would be flexible, but need to be protected from unfair expectations. She didn't drive, so was in the house all the time, except for walks, but we each had time to ourselves - she wasn't "on top of me".

She would tell what food she'd like and I'd buy it. She cooked for DH and we took turns cooking for ourselves. (The replacement didn't.) I'm so pleased I did this, in spite of my huge resistance. Feel free to send me a connection if you'd like to know more.

Good luck!

3GKS

I truly appreciate you sharing with me, thank you!

3GKS

Very helpful, thank you so much for sharing with me.