Aging in Place. Has anyone successfully managed to allow their parents to remain in their own home?

I'm not sure if it's a success for the seniors to remain in their home if they are suffering and at risk. My parents are still in theirs and so far, it's okay. I've been there for the last couple of years, but they are still able to manage pretty independently, though the costs for home maintenance and repairs are going up. I know that eventually, it won't make sense to stay there. There is a lot of land and requires lots of upkeep. I don't think it will be feasible to stay there, even though things are on one level. Still, if they need easy access to bathroom and kitchen, wide hallways, etc., it's not likely to work for them.

My parents [90's] were doing ok aging in place in their 3-story home UNTIL the time came when they were having issues trying to get up and down the stairs. And UNTIL my Mom refused to let caregivers or house cleaners come in to help her.

So I helped as much as I could but I never moved in, gosh I was a senior citizen myself with my own age decline issues, but my parents still viewed me as some whippersnapper who could still do everything :P I must have aged 20 years in those past 7 years of dealing with my parents who refused to move and live in an elder friendly environment.... why on earth are you still in that house???

As usual it was a medical crises that changed everything. Mom passed and Dad accepted caregivers but having 24/hour caregivers was costing him $20k a month. Dad decided to move to Independent/Assisted Living for $4k a month and brought along his caregivers but shorten their days and hours to $2k a month. Still was cheaper then living at home.

So well put. My parents have been aging in place. My father was able to stay in his house until his death. My mother wants to do the same. I've been with them for 6.5 years and feel 20 years older than I did when I started. I look it, too.

I have been supporting my mother's decision to age in place for more than 16 years. She has resisted every attempt to make things easier. She has had two knee replacements but wouldn't do the rehab. Needed hip replacement but wouldn't. Then she fell and broke the "good" hip. She has an ostomy from rectal cancer 25 years ago. She has severe to profound hearing loss which could have been treated and stopped progressing with hearing aides which she refusex to wear. I hurt my back helping her in and out of wheelchairs whenever she left the house.She finally started using a w a lker after breaking her hip. She broke her arm and it didnt set right so she cant put in the hearing aide she finally wants when its just about too late. I retired early in exhaustion and now need back surgery. She just moved into assisted living after a rehab stay after a bowel obstruction caused by ignoring her doctors instructions to stop irrigation of her colostomy. I have been called by lifeline at 2 am more times than i can count to find my mother covered in excrement when her bag burst in the night and she had removed the depends for comfort. She has fired or alienated homecare workers and now shes working on getting herself kicked out of AL for bad behavior. She has been assessed for dementia but instead was pretty much assessed as stubborn and narcissistic. She is developing some paranoia now. She has aged in place and i have been an idiot

deb: Thank you for your eloquent post. In all honesty, there is a big gulf right now between what I think is best and my skill level. I do not come from a medical background at all (wish I did) so every event is harrowing for me right now. But it all comes back to the same question: what is best for Mom. And for right now, it is best for her to be in her home. (btw, I appreciate the very specific information...so hard to find "been-there-done-that" advice online. The roll-in shower is a great idea.)

My sib has quietly bowed out - more like buried head in sand. So I help Mom make most of the hard decisions...not sure which is worse family who butts in all the time or one that is absent.
Anyway, I feel overwhelmed most of the time...and, as many have experienced on this site, my friends have taken a leave of absence until this period in my life is over...frankly, I don't know if I have time to socialize anyway. Regardless, I feel that it is well worth the sacrifice.

Thanks to all who have posted to my query...it is nice to hear about options and pitfalls. You all do not realize how empowering it is to have this support.

I think the idea of allowing elders to stay in their home is the very best for most. Unfortunately the limiting factor is usually finances and personality.

My mom lived independently until 2 years ago. At that time she began falling (advanced Parkinson's) and could no longer stay alone. To hire a care giver 24/7 in her condo would have depleted her finances in a very short time. The alternative was to have her move in with me and my husband. She now has someone with her while I work and we hire addition hours when we want to get out. She is unable to transfer herself at this time, so it is really 24/7 care.

We remodeled the first floor bedroom and bath. Built a ramp off the sundeck. Alot of resouces online, but be careful some of these are lots of money. If you are serious about long term the bathroom should have a roll in shower.

At this pace finances will last a few more years but she will most likely deplete her funds and I will have to quit work or work to pay a caregiver.

Like most on this site, my only sibling bailed early. His expectations were for me to quit my job and save his inheritance.

While I really like this site and appreciate the sharing and support I think you should realize that at least some families do handle caregiving together and it works. Unfortunately those people don't usually go to the internet for support. They don't need to.

It sounds like at least right now your family is working together and looking ahead. 2 factors that mine never had.

For example, if your mom will accept help now you may be able to postpone a crisis. My mom knew she was living over the edge but refused to make her condo more fall proof. The rugs were more important. One fall later she lost all of her independence.

Back to caregivers. I know many will respond with bad experiences, but it is worth a try.

I read some books about hiring your own help, paperwork, taxes etc. I then went to the local hospital, churches, etc and posted an ad. I interviewed and hired a great woman who has been here now 2 years.

As far as I know medicare does not help with any of these expenses. Medicare is for acute, short term help. If some one has no financial resources every state has a form of medical assistance. But this is very limited and not user friendly to say the least.

I have been a practiceing RN for thirty years (wow I feel old). I have arranged home care, hospice and worked with many patients as their families tried to provide the best care for them.
For my mom I saw 2 lawyers and was counseled by a pastor. I know our situation is much much better than what many on have on their plate.

Yet being responsible for a parent is still a major life event. It can happen at any moment and last for decades. God's grace to you and your family as you start this journey.

I am currently the primary caregiver for my 93yr old mother. Until May of last year when my sister was diagnosed with Lymphoma and needed surgery and chemo, she and I shared this responsibility. Mom lives in my home with my husband and I. She has severe Artial Stenosis, a colostomy bag due to an Ileostomy more than 50 yrs ago, and suffers from the beginning stages of Dementia. Two and a half yrs ago she fell and fractured her right shoulder. Because of severe osteoporosis, the bone was not able to be set or pinned and was left to heal on its own. Within a couple of days of the fall she experienced a stroke, (we are thinking due to the fall/shock of the broken shoulder) and now has muscle atrophy in the right hand, she will need surgery the to release the nails from digging into the palm of her hand. It is easy to see that she is certainly not able to care for herself at all. We get no financial assistance, but we do have a semi-electric bed (which Medicare paid for)to make it easier to move her, but she needs to be lifted, walked, and laid down when she gets in and out of bed. We purchased a lift chair for her living room to make it easier for us. I don't know if everything we do for her is how outside medical personnel would be doing it, but we are doing it to the best of our ability. I am sure that if the decision had been made to place her in a facility rather than keep her home, she would not be here today. The depression alone of being away from us would have done her in.
My husband, although not able to bathe and dress her, helps to lift her, get her in and out of her transport chair when there are appts. and make meals for the three of us if I am busy with her. I couldn't ask for a more supportive person. It is overwhelming, it is tiring, and sometimes so emotional that I ask myself, "why"? But then I look at her sitting in HER living room, visiting with her great grandchildren in the surroundings that are HER personal surroundings and answer, "because it was right".
I am not saying that it is right for everyone, but it was the decision we needed to make. It is a promise I will not go back on and with my husband by my side and the support of this community, I know it is something I will continue to do until she no longer needs me.

Cat: ...so well said...thank you.

I have never accepted that there is only one way of doing things (in fact, it makes me suspicious). I know having my mom in a facility right now might make my life easier...but, for now, it is not what is best for her.

The reason that "aging in place" is not at the forefront of our nation's psyche is because no one can make a profit off the seniors who choose to stay in their homes. (It is also the reason why the powers that be do not want to reimburse family caregivers.) As I mentioned above, Medicare staff just want to inundate you with their "services" and facilities are not at all customized...Mom would get very little from either right now.

Because I am such a novice at this, I just put myself in my Mother's shoes and think about how I would like to live out my final days. As you mentioned, if a NH can figure out how to make safety modification to their client's environment, so can I. And I will hire help whenever I need it. I realize that I cannot do it all or Mom may need a differnt placement in the future...but, for now, all I can do is my best.

I would certainly appreciate any advice or comments you have about this movement. I agree, boomers will not be taking kindly to the limited choices we now have for our parents. Perhaps it will start a movement for alternatives...I am also interested in some of the grassroots movements: such as people who come together, communally, and pool their resources so that they can customize and have control over their care. In this way, they do not have to depend on relatives or the government....such a radical idea - I love it!

Lilliput:

There is an aging in place movement and many states are considering PACE programs. You are wise to begin researching - dear lindsey is so king to post the articles on this board. You can also find alot of information on modifications to the home and even tips and tricks others use to accomplish it. Not everything requires the services of LTC or home health agencies. Beware of non-medical agencies that offer services like "remembering and opening mail". Instead, you might want to start with talking to a geriatrician who is involved with the movement.

Concretechange.org is a group that deals with universal design and has good links and advice. It was started by a woman who found handicapped accessiblity was the key for her own quality of life.

I can only add that I have found in caregiving other than the usual learning curve and realities of dealing with help & medical , personal assistance the only real hurdle is attitude. If you don't let the LTC industry sell you on 'the only option', and get along well with your parents, then you will be amazed at how many others are also out there. Safety is a concern of course, but usually that can be addressed in many ways, including simple modifications, up to having a companion. A person can fall at a nursing home just as easily as at home - depends on how much attention is paid and thought given to prevention.

I will come back to this board tomorrow with some other resource links. Good for you asking the question - it is the same one an entire generation of baby boomers will be asking for themselves shortly.

Cat

Sand: A facility may become necessary for my mother in the future especially for medical/safety reasons - or for basically anything I or in-home care cannot handle. (and I pray that I can figure out my limitations when that time comes.)
However, for the near future, I am hoping that mom can stay in her home where she feels safe and independent. Assisted living is not a possibility - even now...mostly because they require that residents be able to get to a "cafeteria." Also there is very little "assisted" in assisted living...everything she would need is "extra."
I wish I had your experiences with long-term care facilities. I have had elderly relatives fall out of bed, have mysterious bruises appear, be given incorrect meds., and end up sitting in soiled clothing for hours - and these were the "nice" places!

It is a blessing that you found a great placement for your mom...thanks for your comments!
Lilli

Dear AC Editor: thank you for the great articles. I was happy to see that we are doing most things on the list...however, a few escaped my notice...so it was great to have the checklists.

Question: I have had a difficult time finding old-timey "land-line" telephones (the princess style with the numbers on the handset)...ones with big numbers would even be better...any ideas?
I am also looking for a lifeline-type company that allows the customer to speak directly into the device...I read about them somewhere, but cannot find the post

I work in a long-term care facility, and I strongly feel this is the best option for many frail seniors. Yes, you have to look around very carefully to find the perfect fit, but they are out there. The regulations in long-term care are extremely strict, so the care is outstanding. This affords the family to have some freedom, and to come and visit your loved one when you want to. Also, you can take your loved one home for visits. There are many activities, and the interaction with peers is wonderful. Do not ever feel guilty for placement. After all, your loved one had a life of his/her own, why shouldn't you? My Mom is in a facility, and she is very happy, well cared for, and doing much better than if she was home on her own. It is a hard step to take, but often it is the best solution.

The number one concern when determining if your parents should remain at home is their safety. Here are some articles, that bring up some issues to consider. I hope it helps you in making a very tough decision:

https://www.agingcare.com/95665
https://www.agingcare.com/95653
https://www.agingcare.com/121363

Cat: Thank you for the info and website...I am going there right now...there must be a way to do this...I do not mind researching and creative problem solving...but it should not be this difficult to allow seniors a choice!! In other words, why can't seniors just request the services they need and not have to have the "whole package" or be warehoused in over-priced housing where the care is questionable? I guess it is just too practical a thought... :o) I wish we had leadership right now that thinks outside the box!!!!

AliceCat: your experiences are not foreign here...we are all in the same boat...and much of caregiving is not pleasant, but our hearts are in the right place...take care and thanks.

Lilli

rassie: My mom had Medicare assistance after a stay in the hospital...but that's it. The person who evaluated her was more concerned about what I was doing for her than what she needed from them. (I felt like telling her that the care they provide consitutes about 1/100th of what I do for her!!!) They gave her three weeks and that was it. The director was more interested in getting her people in and out of her apartment so they could bill Medicare for the maximum. My mom was just exhausted and they were not helping at all - and they would not modify the schedule because "Medicare will not allow it." !?? So I let them go and am back to square one (with the exception of the paid caregiver...at least we have more control over quality.)
Mom has a really good geriatric specialist now...I will ask him about In-Home care through Medicare. I have found that each state and each agency, that contracts through Medicare, has its own "interpretations."

To answer your question - yes. There are many, but you need to go to sites about AIP and the liveability movement. There you will find alot of information and like minded individuals. You might also check with non-profit family caregiver associations and disease specific groups. Many people manage the entire aging process for their parents as caregivers right through to hospice and end of life issues. There are support networks on those sites that attract a different following and can offer you advice and support if you chose to do so.

If you want information on doing it successfully, I have and am still sane and happy and able to offer concrete advice having done it over 7 years now. No regrets although my parent has cognitive issues as well as health issues.

Currently, I am the caregiver for my 93 year old father and 88 year old mother. Dad, though diagnosised with abestosis and is going deaf, is doing beautifully for his age. Mom is in chrontic pain with lymphodemia. Thought there are glimpses of dementia mentally they are doing wonderful.

Even so after two years, the act of caregiver with an average of 3 hours of sleep a night had taken its toll, and the doctor recommended my parents for In Home Care. Medicare is paying the entire service. The nurse comes in an evaluates the condition of each parent. She will continue to monitor them for a few weeks. Then she will 'sign them off' until the doctor contacts the agency for specific care. Twice a week a physical and occupational therapist also work with my parents.

According to the nurse they treat many elder patients who are home along without aid of children or have no relatives alone.
It is the way of the future for the population. I can see myself in the future in a condo with Lifeline and In Home Care.

Lilli: My mom's "pull-up strap" is installed in front of her on cabinet doors. Your situation would be even better because it would be a sturdy wall. You can buy at Auto Zone the old rubber/leather straps that used to come on cars long ago. It is the perfect length to screw it into the wall at each end of the strap. Also, what would work would be a handicapped bar made for bathtubs, etc.

My mom's husband had a special kind of insurance that pays for their care; however, your supplemental insurance to Medicare will pay a portion of the caregiver service. Check with Medicare on that.

Oh Lilli, I am a lot like you, just trying to figure out what's best for everyone. I only just found this board after years of feeling so very alone. I find it helps a little to know that there are others that feel the same way that I do.
Sometimes I find it hard to believe that there are daughters out there that have these great relationships with their mothers and I find myself jealous of them. So, I guess, it makes me more prone to be a bit negative about the caregiving situation, as a reflection of my own caregiving experience.
All I can say is best of luck to you and I hope you figure things out, to give you some piece of mind. :)

You know, I had been trying to get her insurance to get her a scooter and they won't cover it. I can't even get the crappy insurance to cover catheters! The catheter thing is just wrong on the insurance part. She's had sepsis from these filthy things.

Pamela, my mother is the same darn way about scooters and wheelchairs.

ndolan: I could not agree more with your statement: "his parents deserved the right to spend the remainder of their years in dignity in their own home" I know that this arrangement is not always possible, because of medical/safety issues, but I would like to try keeping Mom in her home for as long as possible. I think that her mental health will be much better if she can stay in familiar surroundings and have more control over her life. Her mind is so sharp, I wish her physical health was too!

My heart breaks for the way we treat seniors in this country...I just think the government wants to warehouse them or count on family care until they die and, as the character Scrooge says, "decrease the surface population."

Mom didn't want any walking aids for a long while. She said she felt better holding on to my arm. But, you should see the grumpy looks in doctor's offices when I am helping her without a walker or chair...I feel like telling them, "walk in my shoes for awhile." (and by the way, why don't doctors offices have lower exam tables for elderly or less mobile patients?)

Now she is better about using the walker or I push the transport chair.

thanks for your comments...keep in touch
Lilli

cherryle: thank you for your comments and advice. Mom is in her 80s too...and up until a few years ago was driving, etc. When it all became too much for her, and the sib didn't want to be involved, she moved near me and insisted on her own place. She is very happy there. We do have a caregiver (similar company as you mentioned above: charge $20./hr) that comes once a month - as you wrote, it gives me a little break.

I do have a few more questions if you do not mind:
1) I was not aware that Medicare payed for any in-home care unless it was after a hospital stay or if you we needed to transition to Medicaid...could you please tell me how it works, or if it is a program, which one?
2) where did you attach the bars in front of the commode? Mom's faces a wall with not much room...but this could really help her. (she has no room on the sides.)

thanks,
Lilli

My husband and I made the move from the east coast to the west to take care of my in-laws in their condo. We were the only ones in his family with the ability to do so - and felt that his parents deserved the right to spend the remainder of their years in dignity in their own home. They could not afford assisted living either - it is just so outrageously expensive for most of the elderly to afford.

One thing we have found, which makes things difficult, is that there really is no outside assistance (my husband's brother and sister live back east in other states, but do make trips here once a year) from any organizations...with the exception of one situation - if either of them were to be hospitalized...then there would be home health care afterward for a period of maybe six weeks. It is indeed a shame that that is the case, as there are many of us from the 'sandwich generation' with both parents and children to look after.

My husband and I have managed with great difficulty - we have the rails and the seat in the shower, the wheelchair and walker. His Mom passed away in our second year here, and in the past six months now, his Dad has gone down hill as his heart is giving out. We finally got him to use the walker in the house, but he will not use it when he goes out...and, he states, the wheelchair is out of the question - so my husband patiently walks with him when he goes to the doctor, etc. Other than the doctors, the only other thing his Dad enjoys is going to his favorite casino...and while we do not want to constantly spend our time in casinos, we do this for him. We think it's important to let him enjoy the remainder of the time he has left.

And, while insurance covers some things, it is a shame there do not appear to be any organizations - at least here in Nevada - that offer assistance to family caregivers...it is a sad commentary on the way we treat not only our elderly, but the forgotten family members who care for them at great mental, physical and financial cost.

It depends on how much care your parent needs and their mobility. My Mom is 87, can still drive, and has full cognitive thinking. She pays her own bills, drives, etc. So that I can have a life, we hired a caregiver company to come in 4 hours a day/5 days a week. You can choose however many hours and the cost depends greatly on what part of the country you live in. Medicare covers a lot of the cost and she has a supplemental that then matches what it would cost to stay in assisted living. The company I chose is right at home They are the 3rd largest in the nation. The caregiver they match to your parents' personalities will do light housekeeping, drive your mom to doctor visits, grocery shopping, read to her, provide companionship. They are there on a timely basis as they must call from the customer's phone to let their homebase know they have arrived. If Right at Home doesn't get a call within 7 minutes of when the caregiver is to get there, they will call you and get someone else to your home immediately.

Our cost in the East Texas area is $12-14/hour.

We did modify my mom's home slightly to avoid a step that she trips on consistently. We merely did this by moving furniture from one room to another. Also, we put a banister down the hallway so if she tripped she would have something to grab. In the bathroom, we put grip bars in front of the commode so she could pull herself up. I will be happy to answer more questions if you have them.

Pamela,
I am going through the same thought process: what is best for mom vs. what is the best and most suitable housing. I am not ruling out a facility as, at some point in the future, she may need that level of care. But, for now, I would like to help keep her in her home as long as possible. So little information out there about how to do this!

Right now Mom does not need 24hr. care...so I am hoping that in the future I can supplement the time I devote to her with paid caregivers who are trained to do the things that I am not.

My mom resisted chairs, walkers, and even getting one of those handicapped parking stickers for the longest time. But time IS on your side. As her mobility issues became more pronounced she agreed to a walker to help with her with balance. (I reminded her that the walker was better than ending up in the hospital with a broken hip) I also got her a bathtub seat and handles, etc. which she thought looked "awful" in her bathroom...but she now sees how much easier it is to bathe.

The electric chair came along after she injured her foot. She gave the salesman such a hard time. So I told her that she could pick out any color then I rode in it myself and did "wheelies" to show her how much fun it could be...whatever works, right? (Medicare does pay for one morotorized mobility device if you have not already used this benefit) She also uses a motorized lift lounge chair...this has been a Godsend...bless the person who invented it! (Medicare pays for part of the mechanism..apx. $300.)

Something I found extremely useful is a "transport chair." It is not a clunky wheel chair but someone needs to push it. It is very light weight (14lbs.) and collapseable so I can easily get it into the car. It is also really cute with plaid seats and metallic paint. Mine cost about $175.00. (It is by the DRIVE company, called "Fly-Lite") I take this along shopping and for some reason Mom does not resist because it does not look like a wheel chair.

Seniors resist things because, as they lose mobility, etc. they also lose dignity. If I put myself in their shoes I would feel the same way. This country is not kind to seniors...they would rather that they disappear. I just noticed recently that I see so few seniors when I am out and about. When I was little it was much different...all age groups interacted. How said that we now have separate neighborhoods for single people, young marrieds with children, and the retired. I think so much of what we term dementia comes from social deprivation.

Anyway, back to the subject: If anyone has more success stories of allowing parents to stay in their homes, I would love to hear from you. All suggestions are helpful, since I am just beginning this investigation.

Not to throw a monkey wrench in anything but I got the bill for my moms in home care services and for 2 weeks the bill is $1,900.00. For the first week it was $963.00. It's still cheaper than a facility but I know with medical what they do is consider her income and pay the balance and give her $30.00 misc. What can a person do with $30.00 I ask.

About those scooters, I'd been trying to get my mom to get one of those for the longest but she kept saying she didn't want one even though everytime she saw someone in one she'd say "I don't want one of those". Tried to do the same thing with a wheelchair so it would be easier than walking a foot a minute when we take her out, but again no she didn't want it. Although when I'd take her to the market she'd ride those little motorized baskets. She'd run into everyone towards the end and then one time she ran into an entire display and complained because someone at the store had the audacity to put a display so far out!!!! Can you believe that I still laugh at that one.

But all in all she seems to be content being at home. In the beginning after her stroke she would say that she wanted to go somewhere if just for a while. Ke't wanting to go to a rehab center. But she can olny be transferred there from the Hospital so that was out. When she wanted to go I went and investigated a few facilities. They were just too sad for me though and I couldn't see putting her there. Now I feel differently. If she was there I'd be able to go see her without seeing those volchers who live in her house. But I would be at the facility all the time and they would have no choice to treat my mom with dignity.

Keep me posted on what you do as I'll keep you posted on my situation.

Again I'm so glad I found this site. It's really been a help for me.

AliceCat: I am both in awe of and humbled by you. Thank you so much for taking the time to respond...it means so much to me to get a bird's-eye-view from you and others who have tried in-home, independent, care.

My mom has osteop., heart issues, and Parkinson's. Like your Mom, she does well considering. She now lives independently with lots of help from us. It does take a lot of my time, but she is much happier and healthier in her own home. She does not want to live with family, so this narrows my options a bit.

My thought is (and this may be naive) that instead of using her savings at an assisted living center, that really provides little "customized" care (ie: she would not be able to get to a cafeteria to eat, etc.), she could use those funds to pay for in-home care combined with what we are already doing for her. My hope is that this would allow her to stay in her home, we would have help, and her funds would last longer. She does not need 24hr. care right now so that 2,500 to 5,000 at assist. living could pay for a lot of individualized care. Not having gone through with this plan, I may be oversimplifying things....on the other hand there is no harm in "creative brainstorming."

I agree, I am trying to keep my options opened and think outside the box (heaven knows the system is all about "boxes.") I hate that there are so few humane housing options for seniors right now. I may take a look at models in Europe to see if there is something that I am missing.

Thanks again...sending you good wishes,
Lilli

P. S.: You may already know this: Medicare pays for one mobility device (ie: scooter, motorized chair - some come with lifts in the seat) and will also pay for part of the mechanism in a lift lounge chair. The scooters and chairs get through the doors easier and are easy to maneuver. The medical supply company really helped with the paper work, etc.

Successfully for them, sure, but to the caregiver, it can be very draining. I think you should start gathering information about different programs, to decide what is the best care.

Medicare alone may not cover much. My mother and I decided on Secure Horizons to pick up where Medicare falls short. Basically, Medicare pays Secure Horizons (which, I believe, is Pacificare) to cover the medical costs.

She has quite a bit of coverage, but not out-of-home care, unfortunately. It does cover hospital care and short-term convalescent care. They do provide some basics, like wheelcahairs (that don't fit through the doorways). As far as home modifications, that is solely up to you, unfortunately.

The type of care, your parent needs, can only be determined by what is best for both YOU and them. I stress the word "you" because it can be very draining and you really have to come first and this is a selfless act, if nothing else.

I think that's what it really boils down to. How old is your parent? Are they in the "last stages" or are they somewhat healthy with one or two ailments? The diseases, my mother has, drag on for years and that isn't something to take lightly. You give up your entire life for long-term care. When it's finally "over", you may find yourself alone and aging, yourself. Family, friends and the medical profession forget about the caregiver. You're left there to pick up the pieces.


My mother has multiple sclerosis, congestive heart failure, osteoporosis, arthritis and spondilosis (Good god, I could be missing something). Considering how bad she is, she can move around in a wheelchair, but she has been in and out of the hospital too many times to count. She broke her foot and that required me to literally transfer her everywhere, with my bad back.
I've been doing this seven years (longer if you count certain things from chilhood), following my father's death. I am literally her nurse and parent. To list all of what she needs, could take days, as it would for any long-term caregiver. Bedsores, cleaning up "accidents" and becomming a personal taxi, are to name just a few.

Depending upon the amount of care, your parent requires, I'd even check into a reverse mortgage (if your parent owns or is close to owning their home), to help pay for outside care. What you may not see as a "value" now, you may see it different, after a couple of years. Just keep every possible option open. In my persoonal experience, I am starting to see other options and wished I had went that route.