RSS Feed Print
Developing a future care plan
windyoak
Posted: Saturday, November 2, 2019 6:55 PM
Joined: 10/5/2017
Posts: 4


My siblings and I would very much like to put in place a care plan for my mother to help ease anxiety for my father, her caregiver. I'm looking for advice on options and how much we can solidify in advance of the need for additional care. (Actually, I think that care is needed now, but one battle at a time...)

My 86-year-old dad cares for my 85-year old mom, who has dementia (probably Alzheimer's, although not formally diagnosed). Mom can still eat and bathe (kind of) on her own, can get to the bathroom on her own, but needs help with everything else. She is also hard of hearing so doesn't watch TV or listen to radio. In recent months she's having trouble finding words and putting meaningful sentences together. She sleeps a lot during the day. Sundowning is an issue again with the change of seasons. Dad also cares for the house they have lived in for 50 years. (He's always been obsessed with the yard and spends hours a day raking leaves, etc., while she is inside, sleeping in an easy chair.) He won't hire anyone to help with anything. He accepts help from the kids but reluctantly. He is exhausted all the time, and his health has suffered a lot in the last year. He is starting to have memory issues, too, but nothing that noticeably interferes with her care at this point.

After Dad had a series of  health episodes last year and earlier this year, he promised me he would get some help in during the day - someone to help cook, clean, and provide companionship for Mom a few times a week. He did not and will not do it. I made plenty of phone calls to home care agencies, and so did he, but he just won't commit. I help out with housework on weekends until it upsets Mom so much that Dad has me back off, and then we start the cycle again. My sister has started making meals for them a few times a week, but Dad is not crazy about that, either. He doesn't want to burden her with delivering the food to them, but it's also "too much trouble" for him to go pick it up. (To add to that picture, a neighbor has occasionally dropped off homemade food. Dad won't eat it and asks me how he can get them to stop doing that. Arrghh!)

He is worried that he will die first and Mom will be left without a caregiver. I very much want the family to sit down and discuss options. I see those options as the following, but would like input on other possibilities or on what has worked best for your family.

1. They both move to a place that offers stepped levels of care, where they could be in their own small home now, get meals in a community setting, be around other people, and then be able to obtain more care at the same place as needed.

2. We start with a caregiver coming in a few times a week now. As needs increase, that could be a full-time person. If anything happened to Dad, we would need someone at night, too. Ideally, my sister and I would want to help out, but we have been down that path and could not maintain our own jobs and families, plus our health, while being their caregivers, too.

3. Stick with the status quo. If Dad survives the stress, there will come a point when he will have to admit that Mom needs to be in a memory care facility. Make the move then. 

Which of these options has worked in your family? Or are there others? How do you find a good in-home caregiver or get your parent to agree to that?

Also, can we make a "short list" of acceptable local memory care facilities by visiting them, talking with staff, getting prices, and then determining which has availability if that time comes? Doing this could, I think, give Dad a sense that Mom would be well cared for - and maybe even help him see that they offer active communities now for those who want some measure of care but don't want to give up their independence (as in option No. 1).

I will say that Dad has been very wise with money, but he recently told me, and I also read, that assisted living facilities cost about 10,000 a month where we live in PA. If they both needed care, by my calculations that would wipe out a healthy nest egg in just a few years. Wow.

Sorry for being long-winded, but thank you for reading, and thanks in advance for any advice you can offer.


terei
Posted: Saturday, November 2, 2019 7:38 PM
Joined: 5/16/2017
Posts: 434


I think you have a good grasp of your parents’ situation.   I would tend to go with #3 + have a facility chosen for when the inevitable happens if you need it.

Realistically, your parents are at the end of their lives + if they are coping + want to be ‘left alone’ to do it, I would go along but  continue to deliver healthy foods...ignore his comments about it.   If he does not want to eat the neighbor’s food, tell them that, but also ask them to keep an eye out for issues.  Offer support + be ready to swoop in if there is a crisis.

I would also be familiar with what your father wants as far as a living will, DNRs etc so you are aware of his wishes should he (or mom) have a health crisis.

Read Being Mortal.   None of us are getting out of here alive.


LicketyGlitz
Posted: Saturday, November 2, 2019 9:11 PM
Joined: 2/3/2018
Posts: 510


Gee, windy, you are about 500 better informed and prepared then I was when dementia hit our family! Good on you!

terei nailed the advice that I would offer. The only thing I'll add is that none of us thought our dad would die before our mom, but he did. As that is something your father fears too, let him know if there's still time to get a POA done for your Mom to whichever sibling they choose (or all of you if your family gets along great which is sounds like they do). So if your father should pass away before your mom you can step in with finances and decisions easily instead of having to go through the courts for a conservetorship. (I'm pretty sure I spelled that wrong... too tired to look it up.)

You've got a great plan already! I'd let your dad set the direction, even if you think it's not the optimal one, and go from there.

 

 


GothicGremlin
Posted: Saturday, November 2, 2019 9:33 PM
Joined: 4/7/2019
Posts: 56


I think that's all great advice too.

We've been able to bring in a care giver a few times a week for my sister, mostly to offload me and my brother.  It's all fairly low key, she comes over, cooks food, plays games with my sister, they go to Target, or go to the movies. My sister balked at first, particularly since she didn't want a 'babysitter', but now she looks forward to seeing our care giver. 

I don't know how your parents would feel about that, but maybe if you were able to find the right person?


harshedbuzz
Posted: Sunday, November 3, 2019 11:10 AM
Joined: 3/6/2017
Posts: 1768


windyoak wrote:

My siblings and I would very much like to put in place a care plan for my mother to help ease anxiety for my father, her caregiver. I'm looking for advice on options and how much we can solidify in advance of the need for additional care. (Actually, I think that care is needed now, but one battle at a time...)

In your situation, I would draft my Plan B asap. What's the plan if your dad were to either predecease your mother or become incapacitated? I would ask about having the POAs in place so you can avoid conservatorship or guardianship which is expensive in PA and would require your mom to attend a hearing. I would also tour memory care facilities in case something happens to dad and SNF in case one of them requires rehab after a hospitalization. It's best to be familiar with what is out there.

My 86-year-old dad cares for my 85-year old mom, who has dementia (probably Alzheimer's, although not formally diagnosed).

Why not? Has she had any kind of workup done at all? One of dad's dementias was actually a treatable vitamin deficiency- once we addressed it with IV supplements, he improved a great deal cognitively for a time. 


 Mom can still eat and bathe (kind of) on her own, can get to the bathroom on her own, but needs help with everything else. She is also hard of hearing so doesn't watch TV or listen to radio. In recent months she's having trouble finding words and putting meaningful sentences together. She sleeps a lot during the day. Sundowning is an issue again with the change of seasons. 

Your mom is not an appropriate candidate for a traditional AL based on a hospitality model. She needs specialized MCF based on your description. 

Dad also cares for the house they have lived in for 50 years. (He's always been obsessed with the yard and spends hours a day raking leaves, etc., while she is inside, sleeping in an easy chair.) He won't hire anyone to help with anything. He accepts help from the kids but reluctantly. He is exhausted all the time, and his health has suffered a lot in the last year. He is starting to have memory issues, too, but nothing that noticeably interferes with her care at this point.

This could just be stress, but he should be screened as well. If he does have mild cognitive impairment or early stage dementia, it will inform the sorts of decisions you are trying to make. My mom was switched to a MAP last year and they sent a nurse to her home to do a quick and dirty screening- is this available for your dad?

After Dad had a series of  health episodes last year and earlier this year, he promised me he would get some help in during the day - someone to help cook, clean, and provide companionship for Mom a few times a week. He did not and will not do it. I made plenty of phone calls to home care agencies, and so did he, but he just won't commit. I help out with housework on weekends until it upsets Mom so much that Dad has me back off, and then we start the cycle again. 

This might be workable if he gets her out of the house while you clean. She probably won't recall the state the house was in prior when she returns. 

My sister has started making meals for them a few times a week, but Dad is not crazy about that, either. He doesn't want to burden her with delivering the food to them, but it's also "too much trouble" for him to go pick it up. (To add to that picture, a neighbor has occasionally dropped off homemade food. Dad won't eat it and asks me how he can get them to stop doing that. Arrghh!)

He is worried that he will die first and Mom will be left without a caregiver. I very much want the family to sit down and discuss options. I see those options as the following, but would like input on other possibilities or on what has worked best for your family.

That's a very real concern. About 1/3 of those who are caregivers die before their LO. Given your dad's lack of cooperation and his memory glitches, this might be a conversation best had with siblings at this point. If you can come to a consensus, you will be a more powerful force with which to reckon. 

1. They both move to a place that offers stepped levels of care, where they could be in their own small home now, get meals in a community setting, be around other people, and then be able to obtain more care at the same place as needed.

This would get my vote. I would find a nice CCRC and move them in. They could live in an independent living cottage or apartment with meals and even some housekeeping included. Dad might even be able to bring in caregivers affiliated with the community for an extra fee. As they decline, they could move to assisted living, personal/memory care or SNF-together or individually as circumstances change. 

2. We start with a caregiver coming in a few times a week now. As needs increase, that could be a full-time person. If anything happened to Dad, we would need someone at night, too. Ideally, my sister and I would want to help out, but we have been down that path and could not maintain our own jobs and families, plus our health, while being their caregivers, too.

Full time is 8 hours. Round the clock is 3 people M-F and another 3 on weekends if you use an agency. I'm in the Philly 'burbs, the hourly rate for 1 person with dementia through an agency is about $30/hour. If 2 people need care, figure another $4-5 an hour. 

You can save a bit by hiring via Care.com or privately, but then you have to vet each person, deal with insurance and taxes and deal with no-shows yourself.

3. Stick with the status quo. If Dad survives the stress, there will come a point when he will have to admit that Mom needs to be in a memory care facility. Make the move then. 

If your hunch is correct that dad may have his own memory issues, he could have anosogonosia and never get to a place where he realizes he can't or isn't able to care for your mom. Past behavior is a pretty good indicator of future behavior- he promised to get help and he didn't. Why would this be different?

Which of these options has worked in your family? 

My dad had dementia with my 80 year old mother as caregiver at home. We started with option #2- a HHA 3x a week to provide respite and help with chores. Dad tried to fight me on this, but I told him they were required "doctor's orders because of mom's knee surgery. Otherwise they both had to go to rehab while she recovered. TBH, 12 hours a week wasn't enough of a break for mom and she resented the cost as not money well spent. They ended up with a terrific young woman, but went through some real turkeys including a woman who made off with mom's jewelry. 

Or are there others? 

At the end of the day, it became necessary to place dad in a MCF and leave mom as a community spouse in their home. She refused to consider moving to anything that remotely stank of "nursing home". It worked for us; dad has since passed and she's still in her 55+ cute little carriage house that is walkable to restaurants and shopping.

Also, can we make a "short list" of acceptable local memory care facilities by visiting them, talking with staff, getting prices, and then determining which has availability if that time comes? 

This is exactly what I did. I toured a dozen places. Early on I decided against the private MCF that don't accept Medicaid in case dad outlived his assets. Where I live, MCFs tend to be around $6500-$8000/month. I also looked at the state veterans home which was near the top of my list.


Doing this could, I think, give Dad a sense that Mom would be well cared for - and maybe even help him see that they offer active communities now for those who want some measure of care but don't want to give up their independence (as in option No. 1).

Some of the higher end ones are very nice, but entry is very expensive and some don't have dedicated MC only SNF.

I will say that Dad has been very wise with money, but he recently told me, and I also read, that assisted living facilities cost about 10,000 a month where we live in PA. If they both needed care, by my calculations that would wipe out a healthy nest egg in just a few years. Wow.

If you dad stays in his own home, he can keep a share of their nest egg and money on which to live as well as the house. Most nicer MCF around me expect a person to self-pay for 2-3 years before converting the resident to a Medicaid bed. Be sure you tour both sides if this is an option for your family.

Sorry for being long-winded, but thank you for reading, and thanks in advance for any advice you can offer.

Not long winded at all- more information helps people give a more detailed answer.

Good luck. 



windyoak
Posted: Tuesday, November 5, 2019 6:19 PM
Joined: 10/5/2017
Posts: 4


Thanks to all for the thoughtful - and thought-provoking - responses. I realize now that just putting things down in writing is such a big help.

The family is all set with powers of attorney, advance directives, etc. We just need to get moving on care planning, and I will share your advice with my family.

I know the days ahead will only get more challenging, but I'm so grateful to know this community is here and hope I can help others at some point, too.


King Boo
Posted: Tuesday, November 5, 2019 9:10 PM
Joined: 1/9/2012
Posts: 3067


The cottage scenario ship has probably sailed.  It sounds like Dad's thinking is getting a bit 'fuzzy' with the meal refusal and refusing to accept help except from the kids; you mention memory issues so it is entirely possible Dad is starting a decline as well.  Or mabye it is just old age.  But independent living is NOT going to meet their needs, unless it is an IL apartment where Mom goes to MC during the day but can still go back to the IL apartment with Dad at night.  CCRC's can be like high school sometimes a pecking order.    Nobody that is IL qualified is going to be into socializing with Mom.  But it could work for Dad.  

Unhappily, I have been in a similar situation, and there was little I could do until the crisis happened.  Suboptimal - you have fewer choices in a crisis.  But it is what is.

However, a few tibets to think about.

1.  Could Mom go to adult day care during the day? This would give Dad a break, hopefully maintain his health a bit longer.  Meanwhile, you can get in the house, work on finding out finances, and mabye while you are there, bring a 'friend or co worker who needs the money, you are helping them out a bit' who can clean a bit and be there for a few hours when Mom comes in from Adult Day care.  Don't tell Dad it's because caregiving is too much for him, his pride will not let him accept it.  You are doing it because 'it will let you clean up without upsetting Mom'.   WORK IT - find fiblets that let you get things accomplished.

2.  Everyone should have their first, second and third choice of a nursing home in mind, for that inevitable short term rehabilitation stay after a hospitalization that virtually every elderly person needs after a 3 day qualifying hospital stay.  Sometimes, this rehab stay is the long awaited gateway to placement, whether it be at that nursing home, in their Memory Care, or at another facility.  You should also research other AL/MC/SNF combos in the area.

TIP:  try and find a good facility that has all levels of care.  Less moving, more bang for your buck.  You are not that attractive penniless applying to a new facility if you have spent all your money elsewhere.  Also allows for the ebb flow of function that can happen.  

There is no time to research during a hospitalization, so do this now.  

If you can accomplish #1 great.  If Dad refuses to move you'll have to deal with #3 and all the fallout that comes with it.  Have a plan for if Dad lands in the hospital, what to do with Mom.  She sounds like she needs 24/7supervision.

Prices vary - research.  In southeast PA in 2015, private pay nursing homes ran 11,000/month, Memory Care was 6200/month, assisted living 3500-4000 ish per month.

If you haven't met with a Certified Elder Law Attorney yet (CELA) that could also be a good thing to do.  Even though you have your documents, you have 2 to plan for, one with definite long term care needs.  If Dad lives longer than Mom, his future must be planned for too.   www.nelf.org

 


Mobile AL
Posted: Wednesday, November 6, 2019 12:14 AM
Joined: 7/21/2018
Posts: 13


Today my Daddy and I went to the driver's license place to renew his license (he hasn't driven for over 10 years). I took us there because he need to have an ID to have me put on their bank accounts. Turned out we had to go to another place to get the ID but the lady at the counter told me to just get his license renewed. She said it was quicker and a lot less hassle. And it was cheaper. So that's what we did.

Afterwards we went to the banks and he had me added to their other accounts. I have been the caregiver for my sister with her cancer and my mother with her cancer and my daddy with his Alzheimer's. In August my sister passed away and in October my mother passed away.

My sister had a will and POA and I was on her bank account because she was going to get a stem cell transplant a few years ago. Now, in settling her estate I only have her life insurance policy and her car to handle and her's will be done.

My mother, on the other hand, had her and Daddy's Wills done several years ago and put them in a metal file box along with a copy of her and Daddy's birth certificates, the deed for the house and property and copies of stocks, CD's and insurance policies. She lost the metal box quite a few years ago. I only found this out about two weeks before she died.

Some suggestions to help avoid some of the challenges I've had to deal with:

1. Daddy's Alzheimer's is to the point that he can no longer legally sign a Will if there is a chance, even a slight chance, that it would be challenged by someone, even if it's another family member. When you have a Will done, be sure to name a secondary executor. My father named my mother as executor with my brother as alternate/secondary, according to my mother, and she had named my Daddy executor and my sister as alternate/secondary. I lived out of State at the time so we all thought that would be a good idea on the executors and alternates. But Daddy has Alzheimer's now, my brother died suddenly in December and my sister in August. And my mother just passed away. So, even if I found the Wills now, I would have to go through the probate system to be named as Executor. And Daddy can't sign a new Will.

2. Be familiar with the bank accounts your parents have and have you or one of your siblings put on the account(s). 

3. Be familiar with the bills your parents are obligated to pay, whether it's for a car, house/car insurance, or power or cable bills. And be sure to check on any autopayments that have been set up, and when deposits usually come in.

4. You can talk with a lawyer after you discuss it with your dad and have their house, etc., set up with a Life Estate. They can live in the house, just like they are now, until one or both of them have to be moved into a facility of some type and then you will have the title. In some states, you can avoid listing the house as their property and thereby avoiding it being used as their asset. So be sure to go through a lawyer for this.

5. Same as #1 but with a Power of Attorney and a Living Will.

There may be other things, but these are the problems I'm running into now. If your dad doesn't have it noted on one of his doctors files that he has Alzheimer's, your dad can legally, and without worry, sign the necessary documents. If it has been noted in his doctors notes that he has Alzheimer's, be sure to have his signature done at a lawyer's office or at your dad's doctors office. That way it will be recorded that your dad was cognizant of what he was doing at the time he signed and you will be in a much better position should his Will be challenged.

I feel I'm forgetting something else but I'm sure I'll remember it...eventually.


Mobile AL
Posted: Wednesday, November 6, 2019 11:27 PM
Joined: 7/21/2018
Posts: 13


Mobile AL wrote:

Today my Daddy and I went to the driver's license place to renew his license (he hasn't driven for over 10 years). I took us there because he need to have an ID to have me put on their bank accounts. Turned out we had to go to another place to get the ID but the lady at the counter told me to just get his license renewed. She said it was quicker and a lot less hassle. And it was cheaper. So that's what we did.

Afterwards we went to the banks and he had me added to their other accounts. I have been the caregiver for my sister with her cancer and my mother with her cancer and my daddy with his Alzheimer's. In August my sister passed away and in October my mother passed away.

My sister had a will and POA and I was on her bank account because she was going to get a stem cell transplant a few years ago. Now, in settling her estate I only have her life insurance policy and her car to handle and her's will be done.

My mother, on the other hand, had her and Daddy's Wills done several years ago and put them in a metal file box along with a copy of her and Daddy's birth certificates, the deed for the house and property and copies of stocks, CD's and insurance policies. She lost the metal box quite a few years ago. I only found this out about two weeks before she died.

Some suggestions to help avoid some of the challenges I've had to deal with:

1. Daddy's Alzheimer's is to the point that he can no longer legally sign a Will if there is a chance, even a slight chance, that it would be challenged by someone, even if it's another family member. When you have a Will done, be sure to name a secondary executor. My father named my mother as executor with my brother as alternate/secondary, according to my mother, and she had named my Daddy executor and my sister as alternate/secondary. I lived out of State at the time so we all thought that would be a good idea on the executors and alternates. But Daddy has Alzheimer's now, my brother died suddenly in December and my sister in August. And my mother just passed away. So, even if I found the Wills now, I would have to go through the probate system to be named as Executor. And Daddy can't sign a new Will.

2. Be familiar with the bank accounts your parents have and have you or one of your siblings put on the account(s). 

3. Be familiar with the bills your parents are obligated to pay, whether it's for a car, house/car insurance, or power or cable bills. And be sure to check on any autopayments that have been set up, and when deposits usually come in.

4. You can talk with a lawyer after you discuss it with your dad and have their house, etc., set up with a Life Estate. They can live in the house, just like they are now, until one or both of them have to be moved into a facility of some type and then you will have the title. In some states, you can avoid listing the house as their property and thereby avoiding it being used as their asset. So be sure to go through a lawyer for this.

5. Same as #1 but with a Power of Attorney and a Living Will.

There may be other things, but these are the problems I'm running into now. If your dad doesn't have it noted on one of his doctors files that he has Alzheimer's, your dad can legally, and without worry, sign the necessary documents. If it has been noted in his doctors notes that he has Alzheimer's, be sure to have his signature done at a lawyer's office or at your dad's doctors office. That way it will be recorded that your dad was cognizant of what he was doing at the time he signed and you will be in a much better position should his Will be challenged.

I feel I'm forgetting something else but I'm sure I'll remember it...eventually.

I recall now what else I wanted to add:
6. Get these matters taken care of for you and yours while you're doing them for you parents.  I never realized just what was involved in settling someone's estate until I had to go through it. I keep a notebook just for jotting down what I need to handle so my children won't have to face the challenges I've had to face with both my sister and my mother. It has given me motivation to 'clean up my act' while I still can!

mostlyme
Posted: Friday, November 8, 2019 2:29 AM
Joined: 12/17/2018
Posts: 257


It's so common that our folks don't want to accept help.  I get it - in your Dad's mind, he's still the capable guy taking care of business. 

We use fiblets for those with PWD to help direct them towards an appropriate behavior; why not use fiblets with your Dad too?  You could hire someone and have them come over with you as 'a friend' so there is no defensiveness from your Dad.  She could then say that she loves to 'do hair' or something or other and offer to come by to do your Mom's hair.  And then inch by inch, she could work her way into their hearts.  

When my brother-in-law wanted to bring in help for MIL (he lived with her as her caregiver), she balked.  She didn't want a stranger in the house.  You know what - I wouldn't either!  He went the fiblet route and it worked out great.  She grew to really love her helper and vice versa.  It's just so daunting to bring someone in at first.

You might want to look at other options to agencies.  Perhaps talk to a pastor to see if they could put a notice in their church bulletin or something of that sort.  Finding someone private might fit the bill better as a closer relationship might be forged.  It sounds like Dad doesn't like the idea of a 'worker' in the home.

As for meals, there are companies that offer frozen prepared meals geared towards seniors.  You might want to phone the local senior services to see what options are available.  Years ago, when my mother was still living at home, she used a service like that.  It's great because your Dad would have control over it.  He would phone in his order for the week and it would be delivered on a set date - and he pays for it so it's not charity.  The prices are usually very reasonable and the food is pretty good - not at all like TV dinners - much more 'home-made'.  They usually have options such as Diabetic meals and low salt meals etc.

By what you are saying, I would hesitate to move your folks at this point.  Your Dad is hanging onto control and it sounds like he's doing a good job.  He just needs some respite and some help.  And it sounds like his garden is a huge stress relief for him.  Moving him away from his familiarity might be asking too much with so many other changes.

I sure hope you find a solution that works well.  I feel for your poor Dad trying to hold it all together.  It sounds like he has a lot of pride.  My Dad did too.

Best of luck windy.


mostlyme
Posted: Friday, November 8, 2019 2:48 AM
Joined: 12/17/2018
Posts: 257


One more thing...

I looked at all the MC's in our area well before my mother needed to move.  I visited the one's I was interested in on more than one occasion and spoke to the managers in the different departments as well.  I'm so glad I did that.  It turns out the one I thought I would pick wasn't even in the running.  Had I needed to make a quick decision, that is the one I would have chosen.  Yikes.

I picked the one with the best Recreation and it was also the one closest to me.  The proximity thing has been so awesome.  I can pop in often and it isn't a burden for me.  

What I suggest is make a list of what would be important for you.  For me it was lots of activities, and a Director of Care who includes the family in decision making - especially in regard to medication.  Because you haven't dealt with institutions as of yet, you might want to become informed as to what you should be looking for.  

I purchased a book called 'Nursing Homes and Assisted Living:  The family's guide to making decisions and getting good care' by Peter Siln.  It was helpful with understanding the role of the facility.  

Prior to where my mother is now, she was in a facility that wasn't working out.  They pushed medication even though my mother was having side effects.  The new facility doesn't push medication.  They redirect and distract and they're good at it.  Mom is happier, I'm happier and the vibe of the place is happier.  I highly recommend you start your search now even though you might not require it for a time.

Oh, and I got my mother put on the waiting list of the place she is in now.  I was assured that if Mom's name came up, I wouldn't have to take the placement unless she was ready.  Good thing I did that.  Mom's name didn't come up for 6 months and by that time I was banging on the door!  I needed to wait an additional 2 months after we were ready.  


 
× Close Menu