I have been reading a lot about the "Aging in Place" movement. The research seems to confirm that his healthier and less traumatic for seniors, if it can be managed. It is also more cost effective especially since assissted living centers are now charging between 2,500 and 5,000/month (and, frankly, I cannot see the value in these facilities). The problem is, I cannot find too much specific information about how this is accomplished.
I would appreciate hearing from anyone who has managed to to this and, if so, could you please share your experiences? how do you organize care? does Medicare or Medicaid support these programs? did you make modifications to the home? how mobile is your parent?
thanks,
Lilli
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.
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.
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.
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.
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!
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
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
https://www.agingcare.com/95665
https://www.agingcare.com/95653
https://www.agingcare.com/121363
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
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."
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.
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.
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.
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.
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
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
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.
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.
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.
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.
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.
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.