Planning for disability

[Purron]

It’s been a while. My husband and I are long retired and are doing fine. We're focused these days on caring for my 87 year old mom who sufferers from dementia, COPD and other ailments. My brother, husband and I, who are all retired, spend much of our time caring for her.

Not looking for sympathy or advice on caring for a disabled loved one. Sure many of you have been through or are currently working through similar situations. Mom’s doing fine and we’re working together to take care of her.

This experience has caused us to consider how we will deal with becoming disabled, mentally and/or physically, and dependent on others. Something many of us put off – like making a will.

I’m looking for info and advice on how to plan for this eventuality. Particularly from those without family who can be counted on to provide the care we’ll need if we live long enough – or too long depending on your point of view.

Got a lot of good info when I was planning for retirement from this forum. Hoping there’s some wisdom the group has to share on this. Again, it’s been a while. If there’s already a thread on this topic, please let me know.

Best,

Purron

[97guns]

Quote:

Originally Posted by Purron It’s been a while. My husband and I are long retired and are doing fine. We're focused these days on caring for my 87 year old mom who sufferers from dementia, COPD and other ailments. My brother, husband and I, who are all retired, spend much of our time caring for her. Not looking for sympathy or advice on caring for a disabled loved one. Sure many of you have been through or are currently working through similar situations. Mom’s doing fine and we’re working together to take care of her. This experience has caused us to consider how we will deal with becoming disabled, mentally and/or physically, and dependent on others. Something many of us put off – like making a will. I’m looking for info and advice on how to plan for this eventuality. Particularly from those without family who can be counted on to provide the care we’ll need if we live long enough – or too long depending on your point of view. Got a lot of good info when I was planning for retirement from this forum. Hoping there’s some wisdom the group has to share on this. Again, it’s been a while. If there’s already a thread on this topic, please let me know. Best, Purron

When come times that I need help and have no one to care for me then the help will have to be paid for, either by a care Home or a live in care giver. My dad passed from COPD and I cared for him as long as I could but came the point where I couldn’t my siblings and I agreed to put him into a care Home which is very costly, it was around $5500/mo. I would probably opt to have a live in care giver, possibly for rent free as salary or partial salary

[Souschef]

We have 4 sons who have families, so we do not think we can count on them. Last year we went to an estate planner, and had them draw Power of Attorney and Health care directives along with a pour over will.
DW has more health issues than i do, so I feel at some time in the future, I may be her caregiver. We live in a one story home with very few stairs at the entries. If necessary, I can have a ramp built.
Some people here have gone into CCRC's (Continuing Care Retirement Communities) which might be an option for you to look at.

[Bamaman]

We do not want to be a burden on our children. Our options are:
Stay in our home--with help coming in to take care of us. We also have a large apartment downstairs.
Go to one of two luxurious efficiency apartments that have in house restaurants.
Go into conventional assisted.living.
Live in a nursing home--when there are no options.

We plan to let our children keep their own lives. I watched my sister take care of my parents for 5 years, and they were both full time jobs. 10 years later, she still hasn't got over losing them.

[Freedom56]

Quote:

Originally Posted by Purron It’s been a while. My husband and I are long retired and are doing fine. We're focused these days on caring for my 87 year old mom who sufferers from dementia, COPD and other ailments. My brother, husband and I, who are all retired, spend much of our time caring for her. Not looking for sympathy or advice on caring for a disabled loved one. Sure many of you have been through or are currently working through similar situations. Mom’s doing fine and we’re working together to take care of her. This experience has caused us to consider how we will deal with becoming disabled, mentally and/or physically, and dependent on others. Something many of us put off – like making a will. I’m looking for info and advice on how to plan for this eventuality. Particularly from those without family who can be counted on to provide the care we’ll need if we live long enough – or too long depending on your point of view. Got a lot of good info when I was planning for retirement from this forum. Hoping there’s some wisdom the group has to share on this. Again, it’s been a while. If there’s already a thread on this topic, please let me know. Best, Purron

This is a tough one. We are taking care of our parents who are all 83-84 years old. None have any mental issues and all can walk on their own. But medical issues and injuries to come up from accidental falls. My father-in-law still thinks he's 18 and continues to climb tall ladders and sometime falls. In the case of my in-laws, we have nurse coming to their home every week to check on them (vitals) and prepare their medication (pill boxes) for the next 7 days. There is also a governess at home plus a cook and part-time cleaning lady. Their primary care doctor visits them every 3 months. It's expensive but putting them in a home is not a solution that my wife would accept. To make matters worse, she has a sister who lives nearby but is not in the least bit interested in helping.

In the case of my mother, I take care of the financial matters for her, my brother (who is a doctor) takes care of all her medical issues. All her grand kids (who are grown up (over 18) now) visit her pretty frequently. My older brother takes her to her social events. Since my brother has taken over her medical care, her health has improved considerably. She has was underweight before and now is at normal weight and is much more relaxed. We have a cook prepare meals for her. We have a cleaning lady to clean up and do her laundry. So to answer your question, if the next generation doesn't step up, their inheritance is going to pay for staff that will take care of us. We have a pretty good idea (from our parents) at what age we will eventually need help. We are planing to build up enough financial reserves to cover staff.

Don't forget also that in 15-20 years a lot of technology will be around to help out.

[Purron]

Freedom 56, you're doing a lot of same kind of things we're doing. Mom is more needy at this point as she has dementia and requires a wheelchair. We have caregivers coming in to help out and mom has good insurance. Thing is, she needs someone to supervise her care be it in her home, as it is now, or in an assisted living/nursing home at some point in the future. Dealing with doctors, prescriptions, insurance, Medicare and all of it is critical to her care and she is no longer able to cope with any of this.

We've visited people in nursing/assisted living facilities and observed those who have no one looking out for them. This article from the NYT highlights the reality many face in nursing homes. https://www.nytimes.com/2018/07/07/h...egion=top-news

[Freedom56]

Quote:

Originally Posted by Purron Freedom 56, you're doing a lot of same same kind of things we're doing. Mom is more needy at this point as she has dementia and requires a wheelchair. We have caregivers coming in to help out and mom has good insurance. Thing is, she needs someone to supervise her care be it in her home, as it is now, or in an assisted living/nursing home at some point in the future. Dealing with doctors, prescriptions, insurance, Medicare and all of it is critical to her care and she is no longer able to cope with any of this.

Our biggest problem was getting our parents to accept help at first. Now they are okay with it to a certain extent but are not that crazy about all the people coming in and out. My brother asked my mother to move in with him and even set up a private wing in his house just for her. But she refused and wants to be on her own. You may want to consider asking your Mom to move in if that's an option. Otherwise, you are going to have to hire a governess like we did for my in-laws which is expensive or put her in an assisted living facility which is also expensive. I hope you have siblings that can help out also.

[Purron]

Quote:

Originally Posted by Freedom56 You may want to consider asking your Mom to move in if that's an option. Otherwise, you are going to have to hire a governess like we did for my in-laws which is expensive or put her in an assisted living facility which is also expensive. I hope you have siblings that can help out also.

Yes, these are all options we've considered. Mom's receiving the best of care because my husband, brother and I are looking out for her. We're all retired, live close by, and she has someone in every day to care for her. She is financially secure and has good insurance - including long term care coverage. When the time comes, we'll consider having her move in with one of us or placing her in an assisted living facility. If she goes into assisted living or a nursing home, we'll be close by to supervise her care, visit her daily, and make sure she's properly cared for.

The point of this thread is how the experience of caring for mom has caused us to reflect on our futures. We're looking to plan for the possibility of becoming disabled and having no family or loved ones to do what we're doing for mom. This is a reality many seniors face. What can we do to prepare and plan for this?

[corn18]

Timely thread. My FIL passed away 3 years ago after a 2 year fight with brain/lung cancer. Stubborn SOB who would not accept anything but continuing on as if nothing was wrong. No in home health care allowed. No changes to the house to make it easier. No walker. No mods in the bathroom. His wife was unable to care for him due to having to lift him up to move anywhere. We had to do that. For months. Our final memories of him were wiping his backside and changing the soiled sheets. But he got his wish and died in his house. The part that makes it hard to accept is that they were very well off and could afford any sort of care available. They could easily afford a 24 hour in home nurse, but nope, they let us do all the nasty health care bits and that is our final memory of him. No dementia was involved.

MIL is now very ill with COPD and is the same way. And she won't hire any help either. She's determined to go feet first out of the house. So guess what, we will probably get to do it all again. There is no mental health issues, just stubborn, old people. Love them to death, but my wife and I vowed we would NEVER do that to our children.

Don't do that to your kids. Let them sit with you and reflect on your great life. Tell stories to your grandkids. Talk about the great life you have. Look at old picture albums. Pull out the 16mm home movies you made in the 1950's. Don't make them wipe your butt.

So what to do now? Write down how you want to be cared for. Go look at assisted living places. Some of them are like all inclusive resorts. Set up the finances so it happens without a lot of work on your part, so when you change your mind (or lose your mind), it's all set up for your kids to make it happen. It doesn't mean that you are gettin' busy dieing, it just means you are a loving, caring parent who doesn't want the last memory of you to be what we had.

[bbbamI]

Purron...so good to hear from you.
Here's a thread that's a couple of years old. Perhaps it can help....

http://www.early-retirement.org/foru...ight=childless

[Freedom56]

Quote:

Originally Posted by Purron The point of this thread is how the experience of caring for mom has caused us to reflect on our futures. We're looking to plan for the possibility of becoming disabled and having no family or loved ones to do what we're doing for mom. This is a reality many seniors face. What can we do to prepare and plan for this?

Yes we do think about it also. We are learning from caring for our parents on what works and what doesn't. However, in 25 -30 years when we reach their age, technology will be completely different. For example, driver-less cars will be common, wheel chairs will be much more mobile and completely autonomous, robots will do more cooking and cleaning, and so on. The key is to have enough money to pay for all of the technology that is to come. I would focus on staying healthy and continue to care for your Mom.

[bmcgonig]

I'm presently taking care of my 100yr old mom who is perfectly healthy, but has dementia. Except for the fact that I'm 5000 miles from home, it's easy as these things go cos of her physical health but I think about what I'll do for myself when I'm older. No kids here to help out.

My first idea is that at a "certain age" I will go into a CCRC. That might be early 70s, or slightly later. I don't want to go too soon, but don't want to go too late either. Need to be healthy enough to get in and make some friends, but old enough to be tired of taking care of a house. Not sure whether it will be a class A where they have the assisted living and nursing home all inclusive, or one where I pay extra for that. The former gives great peace of mind and I have one in mind. I have also one of the latter in mind which I really like. Thankfully I have a house that I will sell to help with all the expenses.

I also will need a community of friends to watch out for me in later life as I won't have any family close by. I have that now but will I have that when I'm 90 or possibly 100 (like my mom)? Possibly not. Probably will need professional help at some stage.

Corn18:

I feel your pain. My mom has dementia so in my case I can imagine myself without memory and get into her mindset to understand her positions sometimes. Every week I have a lady come in to help her wash and she resists it every time. Annoying as hell. But given her mind, it's fine. If this was just stubbornness, and not dementia, I think I would explode. I have developed much sympathy for people with dementia, but I would have less than zero with stubbornness. It's terribly complicated for you but my reaction would be to never wipe a stubborn person's butt if there are other options.

[trumpeting_angel]

I have a younger, but less healthy spouse, and a devoted daughter who just had a baby and lives 4 hours away. I’m 65. I don’t believe I can afford LTC insurance. My plans are: one-level living, make explicit will/advance directives/etc., plan for in-home care, and save enough to cover LTC if there’s no other alternative.

My parents and younger sister died early from cancer (da at 69, mom at 72, sis at 47). I take advantage of all the screening tests and hope for scientific advances (how’s that for a plan?!). I do what I can to stay healthy.

I certainly don’t want heroic measures if my mind is going. Having worked in assisted living and nursing facilities, that picture isn’t pretty for either patient or family. The shortage of caregivers for us boomers is on my mind, too.

[athena53]

DS is my only child and he lives 3 hours away. My plan is that when I'm incapable of living independently (even with paid help for things like mowing the lawn and cleaning the house, and services such as Uber and grocery delivery), I'll move near them in an appropriate community. Might be Assisted Living, Independent Living or a CCRC. The money is there, thank heaven, for whatever I need. I just want them to be there and to visit once in awhile.

DS, bless him, has said he'd take me in but that was before he married DDIL so he was making promises for someone not even in the picture. They work hard- DS at his career and DDIL mothering my two wonderful granddaughters. When their kids are out of the house and they can enjoy their time together, I don't want them waking with a jolt when they hear a thump at night because it might be me falling in the bathroom or wandering out the door. They may also have DDIL's parents to contend with- they're wonderful people but of modest means. I think when the first one goes, the other will have a hard time of it between reduced SS income and not having the other spouse around so they can keep watch over each other.

I already have a Will and a healthcare POA and have told DS not to use artificial means to keep me alive if I'm going to be bedridden or not all there mentally afterwards. I've also told him/them that they MUST have a talk with me if they feel my judgment is failing when it comes to finances.

[MBAustin]

Welcome back, Purron! I'm glad someone found the thread I was thinking of, although this topic seems to come up every few months so there may be more out there.

A CPA friend of mine looks out in various ways for some of her older clients - not just financial matters but also general life assistance. She bills for the time. She's a trusted advisor to them and it seems to work out well.

[W2R]

Purron, it's so good to hear from you.

This thread is on a great topic, one that has been bothering me for some time That's especially true now that I have turned 70. We always planned to "age in place", and neither of us have children or other relatives in the area. We do have each other and live next door to one another.

Right now I just have a vague plan to stay in the house as long as I can, and then if/when necessary, move into a CCRC. Or, I could pay someone to come to my home and take care of me at that time. Problem is, I love my privacy and don't want to give it up. It's depressing to think about! I hope I will get some better ideas as I read this thread.

I have been putting off having a will made (and probably POA and health care directives) until age 70. Well now I'm 70 so no more procrastinating. This is all in the realm of "I don't wanna think about it" but I suppose I must.

[Purron]

Thanks everyone! bbbamI, the link you posted to a prior thread on this topic was very helpful. It's great to hear from so many of you. I appreciate the information, personal experiences and advice all of you have shared.

This has been very much on my mind as I care for my disabled mother. DH and I are meeting with our financial advisor next week and with our attorney in the near future. We're in our mid 60s and believe now is the time to start making plans.

I hope the discussion continues.

[meierlde]

One of the recent developments is grocery delivery showing up at least in major metro areas. With the various sources of non perishable delivery there becomes no need to go out for shopping. So if someone is home bound they don't need to rely on neighbors for grocery shopping, or indeed for any shopping, in one sense this is a back to the future movement as 60 years ago you could at least get milk and bread delivered. (And if I recall correctly some stores actually delivered back then).

Of course there are a few renovations you can make, start with 36 inch doors to rooms for wheelchair access, and some grab bars. To go a bit further if you can make it so that if you had to you lived on one level that would help. (that might take moving the Laundry which would be a serious renovation). So it becomes possible to work around physical restrictions. (Or you could put in a stair elevator like my folks did) Also if you use stairs be sure there is a phone at the bottom of the stairs. (My cell phone lives there since it is a dumb phone). Also a phone by the bed and in the kitchen.



When the time comes consider an alert pendant or watch (guys are probably more used to wrist watches than necklaces)



It turns out alexa et al are not yet set up to call 911 but they could call someone else for help. Instead of the pendant a number of dots could provide help all be it there is some work needed also to change the alert phrase to mayday. In that model you would say mayday as a distress call just as planes and ships do.