Home care or placement?

Wow! You’re parents are very lucky to have you. Many facilities offer what they call a ‘respite stay.’ A respite stay is not only an opportunity for the caregiver to get a break (a respite), but also for the seniors to try out in assisted-living without feeling as though they fully committed.  We encourage the families to talk to the facilities, as many require a 10 day minimum stay. The majority of seniors who do a respite stay actually opt to stay in the assisted-living long-term. After two weeks many find they enjoy the socialization of others, the assistance they need at their fingertips, and the ability to spend time with their family as a family not just caregivers. 

Two days Into my decision, and I’m really feeling downright guilty about indulging my mom’s desire to keep a comfortable, albeit difficult daily routine. She has had a preconceived idea that all assisted-living facilities are like something out of a Charles Dickens novel. The facility I identified as *the* place is like living on a cruise ship. 41 residents, large, helpful staff, and a wonderful concierge desk. A local university comes in three times a week to deliver lectures on interesting topics, and they have at least three activities a day specifically designed to help with the mind and body connection. This is perfect for my mother, who desperately needed social interaction as well as physical exercise, and my father who, at at stage seven AD just needs some mental stimulation with her at his side as well. Now she sleeps through the night, and is not responsible for his clean up. I am relieved, but just a little bit little sad that I didn’t push this sooner.

My mother was undiagnosed bipolar which made it very difficult to be around growing up. We always had a conflicted relationship. Of the 3 siblings, I never dreamt she would end up living with me in her last years.
However with the blessing of the correct meds, she has calmed down considerably. Also she realizes that this is her last stop, & if she doesn't behave, she may be out.
I agree that unless your senior can afford a very Nice AL, many NHs are undesirable. The care is minimal. I know people who have worked in them, and their workload is unrealistic.
Anyway we all do what we can.

I'm new here but some of the comments seem selfish. Home care vs. a nursing home?

I have had doctors who do rounds in those homes say to me, "shoot me twice before you put me in one of these places". The amount of neglect and abuse that goes on in nursing homes is unbelievable.

You all make it seem like a nursing home is a happy ending. It isn't. If you cannot provide that level of care and it's a 1:1 ratio, what do you think will happen there?

I am so grateful for this online community. I have read each and every one of your suggestions and considered them as I made my decision. I checked them in to the lovely facility this morning. We walked into the front door and Mom exhaled. Big. We turned Dad’s care over to the professionals and enjoyed exploring the many amenities of the facility. I will take off a few days and then resume my normal life. Thank you for sharing your experiences and advice!

I was able to semi-retire, and continue to work 1 day week.
That allowed me to bring my 87 yo mom out of assisted living to live with me & my hubby. She has the funds to pay me for taking
Care of her, which is way less than the assisted living was costing her. It has been 6 months, so far so good. Yes I do all her meals, laundry, shopping, financial, legal, Dr appointments, dressing her, showers, and including diapers.
When I need to go out for a few hours, I pay someone to be with her.
If we left her in the AL, her funds would have been depleted in a few short years.
I am determined to see this through.
Fortunately she is very grateful & appreciative of what we are doing for her.

The two most relevant phrases to me are "...Mom is exhausted caring for Dad" and "This past year has been so difficult trying to balance work and elder care...".

First, if Mom is exhausted then her health is at risk. One day sooner than you think you may get up one morning or come home from work to find your mother has collapsed. Over 30% of primary care givers die before the person they care for.

Second the stress of balancing work and care giving can get to a very extreme level where you do not function well at either task.

The third point you need to consider is that at some point your father will need 7/24/365 care that one person and an aging spouse cannot provide alone. You will either need in home care givers or a facility at some point in his decline.

Moving your parents to AL and MC is the easiest path to provide good quality care, particularly if the facility is a good one and it seems your parents have the resources to provide for a good one. Are your parents alone while you're working? If you retired, would you need to stay home with Dad or could Mom attend a Senior Center while you take care of Dad? Your mother is socially isolated now while she cares for your father. Whether she wants to go or not, she may do much better in AL where she can be with your father as much as she wants, but still get a good night's sleep in her own room and see other people in her age bracket when she wants.

I wouldn't retire early now because that's something that's a permanent change and difficult to impossible to back out. You can always take that road later. How would you feel if you retire now and then your father passes in a few months? Would you want to be back at work or would the lighter load of taking care of your Mom keep you busy enough?

If you want to honor your mother's wishes and keep your parents at home, I strongly suggest hiring in home care attendants to take over your father's direct care for at least 12-16 hours a day. Be prepared to take that to 24/7 or move your father to MC at a moment's notice if/when circumstances change. A case manager who will handle engaging the attendants, taking your parents to routine doctor appointments, etc would also be a good choice to minimize the impact on your work schedule. Since your mother wants to remain at home, I suggest negotiating she attends/socializes at a senior center 2-3 mornings each week to preserve her own health.

I supported my mother taking care of my father with vascular dementia at home for nearly 20 years. When dementia took over to the point my father became a danger to himself and my mother and he needed better management of his other health issues, I placed him in a good MC against his wishes. Mom moved in with me; she has no short term memory and MCI but no true dementia. Her personality is intact and she can make good decisions if she can remember everything she needs to know to make them. She recently fell twice in just three months; the second fall impairing her mobility (in the short term until she heals) and requiring more direct care. So even though she doesn't like it, we now have in home care covering the hours I need to be in the office or attending some event like a kid's ball game. Because of the falls, I expect to keep this arrangement in place even when Mom is back on her feet again. I understand wanting to honor your parent's wishes but you also need to ensure their safety and over all well being. To make this work well both sides need to be willing to compromise when needed.

What do you really want to do here? Working outside the home is not all about the money. Keep that in mind and ask yourself what you want to do - do you like your job, does it provide a social outlet, do you have dreams of what you want to do in retirement?  Would you feel trapped staying around home and being a sort of "stay at home mom" for your parents?

At present, it sounds like you go out to work, home is not a prison. Do you really want to be around parents 24/7? Retirement can be a big change in this sense.

Have you considered, It they have the means, that they pay for caregivers' services to come into your home? Would that work for you or would you feel your privacy is violated?

Your mom may be happy with the situation as it is, but that is not the point here.  Are You happy?

Home care - the best care is at home, you could continue working and at the same time making sure / supervising that they are well taken care of -- try getting a responsible, compassionate person to care for them.
Should you change your mind later on and decide to place both your dad and your mom in a living facility, make sure you will always have someone to watch over them - that's very important. Regardless of how nice and confortable a place might seem or look you never know how your parents will be treated or taken care of by all the staff.

I was between jobs when my mother's health began to deteriorate and I realized she shouldn't be alone any more. I too looked at the economics involved and decided that living with mom and accepting a modest salary would actually be beneficial to both of us, and things went pretty well for a few years. I had every intention of keeping my mother with me until her final breath but I underestimated the amount of care that was needed and the physical and emotional toll it took - I crashed and burned looking after one parent, I can't even imagine trying to care for two. Perhaps you are stronger than me - many people on the forum have stuck by their commitment to see things through until the end - but if you do keep them at home you must have a plan B in place in case you find that those 5 years (and more) are longer than you ever dreamed possible and are are more than you can bear.

Quality of life and resource availability will be the determining factors. There are some wonderful communities which might actually improve your mother’s quality of life and provide the additional support your dad needs. Do they have any friends who’ve moved into an elder community? Perhaps your mother might be more agreeable to the idea if she already knew someone there.

The biggest thing i realized was that a lot of seniors fear being dumped and forgotten. If y’all decide a community would be the best decision, it’s important to commit to being present, and following through on that commitment.

Kudos to you for even considering retiring early. I had the reverse situation. Mom needed much care (79) and Dad a young 75 nearly put himself in a hospital trying to care for her. After the difficult move, her health improved under more consistent and skilled care so that the next 2 years of her life were quality years. Dad went to see her most every day, but his health improved and he was able to spend time with other friends, have coffee with the guys. We'd often meet at her ALF for family dinners including my son and his fiancee' now my daughter in law. As a daughter, who is nowhere near close to retiring or retirement age, I say don't cheat yourself out of what you might be able to do in your last professional years. You can still be available to them and enjoy quality time with without living under the same roof and providing direct care. My father was somewhat resentful after I relocated to his state after my Mom passed and then proceeded to find my own place to live. However, it is exhausting as you say. You have your golden years to consider, take care of yourself and don't let care of parents affect your retirement living or sacrifice your own health when there are professionals who can help you manage the situation.

I too thought about leaving the workforce to care for my now 95 year old mother but I have no pension to take down

I kept her home far longer than I should through numerous falls with little to no outside help - it took a huge toll on me - I tried to bring in caregivers for 12 hours a day while I worked but she did not cope well with strangers in the house - ran outside and fell - caregivers too are not reliable and will leave in the middle of a shift

nearly 3 years ago, I placed mom in a "nice private pay memory care facility" straight from the hospital following a fall - it has been an incredibly difficult journey as well and we are nearing the depletion of financial resources as it has been necessary to have private caregivers with her in the facility

set expectations realistically for both yourself and your parents - assume the cost of the facility is double of what you think going in and you'll need 10 years of care and if their resources can cover it then that should make the decision easier

if you keep them at home, is the situation set up for advanced care needs - think wheelchair access and use of the bathroom and shower
my mom went from being able to stand and walk a few feet to being immobile in a couple of days

is your dad exhibiting any behavior issues - wandering, sleep disorders or aggressive actions - these are often the reason families place loved ones in a facility

There is no right answer and cost and quality of care depends a lot on where you are located but if you can make a decision before you are in a crisis or medical emergency then your road should be easier than most

It will only get more difficult as they decline. As has been said, care giving takes a toll on the health of the caregiver. You could have 10 or more years of care giving 2 elders. I am 81 and mother is 106. I never thought it would last this long and though she is in last stage of vascular dementia, which, by the way, was only diagnosed after she was 100, there is no end in sight. Mother is in an NH now, well cared for but I still have the jobs of financial and health POA, At times , I feel it is too much to deal with along with my own affairs and a few health issues of my own. Take care of yourself first. You don't know what lies ahead and the final chapters could be very long,

I did this at 60 to help with ALZ MIL. She was 93 and very quickly we realized she needed to be in a Memory Care. The stress of all of what we were dealing with (family, her house and belongings) moving her three times was too much to not affect my job. The week she died my mother was diagnosed with dementia. Our entire world revolves around devastating financial decisions she continues to make (she lives alone but I am POA) dr appointments, hospitals, rehabs from falls.

As selfish as it sounds, I should’ve kept my job/friends it’s important to your own mental health. Nothing will change the trajectory of these diseases.

Traveler - for those whose parents are in their 90’s to me it’s a vast unknown. For nonagenarian’s, well, their outside of any of the standard actuarial tables / studies and just as likely to hit 100 or another 6 months. So because of the unknowns on 90+er’s, you need to over plan like for having 1 or both a decade.

so are they financially well off with at least 800k+? 1M+? More?
If not, then they will likely outlive their $. I’ve been on this site now for years and over & over folks think their parents will have enough $ only to find that the costs of care are horrendously expensive.
If they live long enough, their needs will get beyond your ability & they will run out of assets so the requirements for Medicaid eligibility need to be a consideration. Plus caregiver burnout is a very real thing.

The costs of private pay NH could easily run 8k -15k a mo each. NH avg stay is 2.5 years so 240k-450k each.
In-home care seems to average $20 hr. So 2Ok a year part time for each; 40k paid to you via a legally drawn up caregiver agreement with taxes & FICA done. If by “backfill” you mean your folks match your current salary, that could pose a problem if they outlive their $ and they end up applying for Medicaid.

Really you as their dpoa need to pull together exactly what their financials are and take them with you to meet with an elder law atty. I’d suggest you get with one that is NAELA or CELA level of experience as their situation is more an estate planning if they truly have significant assets.

ALSO really where is your husbands input in all this?
Does he share your view of his own late 50’s & 60’s as having your parents living with you both and your life as a couple revolving around being 24/7 oversight and caregiver to your parents?

Since your parents are "well off" I would suggest an assisted living/Alzheimer's facility.  What you want to do is commendable but you will get BURNED OUT!  No matter how much we love our parents that dynamic will change and trust me you will start to feel exhausted, irritable and resentful.  I think at 57 years young you need mental and physical and emotional stimulation.  And if you don't care for yourself your health will suffer.  Also their attitudes and personalities change with age and they can become combative, and just plain mean.  I'm not sure if you are single or married.  But trying to care for two aging parents will wear you down to a pulp.  Plus - these older people can really hang on for what seems like forever.  And if you were to "retire" it can be very hard to secure a job at that age.  Trust me I know because I'm 58 and have been there.  I only have one parent - my mother - who is 92  and can still drive!  I think the rest of my family really expects me to quit working and care for her.  I have retired at 49 with 31 years of service.   But I was always going to continue working and get an annuity and a salary.  I'm single and that is the only way to make it in this very expensive world.  I let her move in with me again - stupidly thinking this time she would be appreciative.  Nope -didn't last.  Her personality is changing and I'm stuck wondering how much longer she can stay by herself all day.  I have two siblings that help very, very little.  I recently quit my job and was going through major depression, and some health issues.  I was trying to find work closer to home but after applying for 50 jobs - never heard back except for two.   Luckily one of them was my previous employment who really wanted me back.  I was almost to the point that I was going to sell my home and move and she could get her own apartment because I'm so tired of this.  No privacy, no time to myself - and forget about dating.  I have friends, hobbies, interests and these have mostly been put on the back burner.  I sometimes feel like there is no light and she could live to be a 100!  Her recent physical exam was perfect.  I've suffered shingles, eczema, heart palpitations, and extreme fatigue.  I recently have scheduled my yearly exams because last year I didn't get them.  Hopefully I'm healthy and can still keep trucking but it still doesn't change my home dynamic.  I'm the only one really helping but if I don't everything she wants - when she wants it - there is a problem.  So for whatever it's worth these are my 2 cents.  Good luck to you!

Take the blessing that has been offered to you. You won’t regret it. You have a right to a good life too...& this will provide the perfect life for your parents 🤗hugs

Interesting,how can one predict the demise or life of parents...there is no one answer...my brother caregiver and son of immigrant parents spent his life working then living with his parents as they aged out...actually I really think they lived a longer happier life with having their son who never married, along side of them and he owned his own home that he rented out while working after their restaurant business ended and brother worked in other jobs.......I his sister lived in another city most of my life...so end of story my Mom was 90 when she passed, and my Dad was 97 when he passed in a NH as he had to be admitted after his caretaker son predeceased his Father.......so my lesson here is careful
that the caretaker will die of burnout and resentment after the work had all been done by the son, taking his father to church with dressing,bathing,not sleeping
in other room close by to listen to father so he does not get up at nite and fall..I have only to live with myself as I never thought my brother would predecease
Dad..............i was not watching carefully...brother had some mysterious illness to do with an infection, going to his brain,being sick for a year prior...as well as Dad having multiple bouts of dementia,uti's and irritablility...also blind...this weighed down on brother... So advice to all of you this is a very unselfish,giving,humanitarian gift to give your parents but in this case caregiver
died waiting for his Father to diminish but it went the other way, brother and I were waiting to go to Europe and live together when the folks died but they both
Dad and son died six months apart............so planning sometimes is impossible..yes...and there were no savings here other than a house........could this have had a different outcome.........?
The NH,where i admitted Dad four weeks after funeral of brother caretaker son, was paid with social and a pension from the VA........also Medicaid coming in two mos later after I bought a Funeral Trust with the 10,000 in his account which really belonged to the caretaker son who refused to touch it..............i,daughter, got Aid And Attendance from the VA for Dad,at 96yrs old, to help my brother, ..up until then it was
living modestly on 2 low soc.sec.1100 per mo and son taking care bill paying etc. and giving to their church.............why more people do not know about the help from the VA is a mystery to me however to those on this site my parents were low income.......and Dad had a subarachnoid hemmorage five years prior to gettting A&A........we just did not know about it...........do elder lawyers tell you?.....I never thought my brother would die at 69 years old before Dad at 98 years.Also the VA and Medicare would have sent in help for Dad but again they were like two buddies and bringing in strangers was not in the cards i suppose...brother did not want me there although I noticed his resentment sometimes....especially when the mother started becoming sick...and died...

if you can get them in a nursing home, do so. Caregiving will suck the life out of you and is a very slow, prolonged soul-destroying process. think how bad it will be when they start refusing their medications, and you have to change their diapers including clean their bowel movements...and manage their bowels. and they can get impacted as little as two days. That means stools are so hard and large they are stuck. and you better do something or it's a trip to the Emergency Room.

I would never try to tell you what you “should” do, as in the end, only you know what is right for you. I applaud you for seeking input here and I think you’ve gotten good food for thought. I can only share my experience. I did decide to retire three years ago to help my folks get moved and settled into a graduated care facility, and to continue supporting them through their transitions (I live 2100 miles away, not working would make traveling to them much easier I thought). I worked part time with a new employer for a couple years and continued to educate myself as a care giver.

Then my mother’s only brother was also diagnosed with AD (their mother suffered from it for many years and finally died from it). Then my mother’s maternal aunt (the youngest of her mother’s siblings) ended up in the same facility as my folks, also with AD. My education quickly began to include prevention measures given this seemingly strong genetic link.

I quickly realized I needed to go back to work. Supporting the parts of my parents’ care that were not covered by insurance/Medicare was becoming a source of stress, as financially it limited my ability to visit, and their care was quickly becoming my world. I was disengaged, not mentally stimulated, stressed out over finances, depressed and not coping well in terms of diet and exercise (sounds like early motherhood, except, in most cases, you have a sense of hope that things will improve as your baby grows). This, along with genetics made a perfect recipe for me ending up exactly like my folks.

I am now back to working full time and I have no plans to retire this time until/unless I become physically, mentally, or emotionally unable to work. Being at work has also helped me build better boundaries with my folks and rely on the facility in a more healthy way. I know this is what the parents who raised me would want for me, and I am a better daughter, wife, aunt, and person for it. As I said, this was my decision and may not be the best for you. I only tell you this in hopes of providing more food for thought. Wishing you clarity and peace as you navigate the road ahead.

No one has mentioned it yet, but you might want to draw up a caregiving agreement and get the legal stuff tidied up with a trustworthy elder law attorney who charges by the task and not the time (lesson learned the hard way). None of us can predict our futures, and while you all seem comfortable financially now, your lost income may be an issue in your own future long after your parents are out of the picture. It will be a load to care for both of them, though your environment and financial circumstances sound really great compared to many. It gets rough when someone has dementia and becomes incontinent. But if they can afford the in-home help, and if you make clear you will travel as you planned, and you want to do this...go for it. The hard thing is you have found a good place. And changes in environments are hard. In my case I am living with mom who has dementia (96) and is fairly functional...but could use more hands on care, and dad who is clueless but active and deaf at 101. It's a tradeoff for me because we all need each other...and I often contemplate the damage that would come from an early retirement to caregive. Dad is so old school that he believes caring for family is expected, not a job that is paid for so rejected the suggestion of a caregiver agreement, yet I have taken on more and more and more. It's all very overwhelming...but at least you have the capacity to make the best decision for all of you. Perhaps they can have a trial run at the place you've found?

Mom is fully independent and a young 90 now, but it would be unrealistic to imagine she will continue this way. Weather can change at any moment, at that age

I keep posting twice! You can remove the text, but not the post. Sorry!

That’s a tricky one, because you and your parents are well off financially, so you have lots of options. For the near future, if they stay with you, working out the ‘deal breakers’ is a good idea, and making a guess about when that could happen is also in there. You don’t want your mother to be exhausted, but her capability is still an important part of how things will work. There is also the question of your own life. At 57, you won’t want to be tied hand and foot. Of course you wouldn’t be while your mother is still so well, but that might change overnight. The next 20 years should be a retirement when you have a chance to travel and enjoy yourself if you can. If your parents live with you, that could require organising quite extensive (and expensive) in-home care, as well as ‘back-filling’ your own salary. Do you want to share your home with carers as well as your parents?

You could also think about ‘post deal breaker’. If the situation deteriorates quickly and they go into a nursing home at $5000 a month each, how does this work with the finances? And will you miss your work if you take quite an early retirement, and then end up living on your own? I am sure that you could find other worthwhile things to do, but if you are really committed to what you do now, you could regret an early retirement that turned out not to be necessary.

This may be the last thing on your mind, but demographics today mean that a 57 year old man (I guess you are male) with his finances in order is a highly attractive marriage proposition. How could a relationship in three or four years' time alter things?

These are all fairly negative ‘what if’s’. Living together might be a good idea that works well for you, your mother and your father. However thinking about the down side is the best insurance for not regretting things that are hard to change later. Doing it should make you more confident about your decision, whichever way it goes. Best wishes.

I think ur idea is a good one. Dad will get worse as his ALZ progresses. Do you feel you can do the physical things that need to be done? By retiring early it effects you SS. 24/7 caring for one person is bad enough but 2? You won't have a life.