A hard topic to discuss and harder to manage. How do we care for our elderly parents?
A Difficult Topic to Discuss – Senior Care
Veering away from our typical home decor posts, I want to share my experience and struggles for how I am caring for my elderly parents. This is a difficult topic to discuss and work through. As children, we always looked up to our parents for guidance, love, care, and support. But when those tables turn, it’s an emotional rollercoaster that we have to navigate the best we can. We have to deal with the emotions of seeing our parents becoming helpless and in need of our support when it was always the other way around. In addition, we have to begin managing the financial burden of elder care. Whatever stage you may be in your life, there will come a time when you have to think about how you are going to care for your aging parents.
Have You Planned to Care for Your Aging Parents?
If you are lucky enough, your parents have already thought about this topic and have planned accordingly, perhaps by purchasing long term care insurance to help with the mounting cost of assisted living or buying into a retirement or continuing care community. I’ll touch more on this later in my discussion. Or perhaps one or both of your parents already lives with you and you will be their care giver indefinitely. Maybe you have planned this out and purchased a home with ample room for your parents to live independently or as they age you are able to accommodate their changing needs. So many scenarios to think about, I was not prepared to handle this situation, but I did the best I could.
My Story of Caring for My Aging Parents
Eight years ago, unbeknownst to us, my mom was in the early stages of Alzheimer’s disease, my brother and I were not prepared. Our parents were living independently in their home we grew up in, which was a colonial home with two stories and a basement. Stairs leading up to the bedrooms were getting tougher for our parents to climb. We started noticing little things, memory loss or confusion, then bigger issues were arising like bills not getting paid, or forgetting groceries in the car. My brother and I started worrying about our parents safety – what if the gas range isn’t turned off or there is a deadly accident? Mom had been falling for some time, but was always able to get back up herself. None of the falls were serious, but difficult on dad. Then there came a time when mom could not get up herself and dad was not able to help mom get up without assistance.
My brother and I knew that mom and dad needed help. Our first course of action was to get them help in their home. We looked online for resources to find someone qualified to provide in home care. I had use care.com in the past when I was looking for child care and was happy with the process and the people I found.
We started by having someone come to the home a few times a week for 4-6 hours a day. Mom did not like strangers coming into her home. We tried several different care givers and mom complained about each one. “They aren’t doing enough”, “all they do is sit on the sofa”, “I don’t like what they are cooking”, “I can’t find my glasses…I think they stole them”! The complaining went on and on. While there may have been a bit of truth to some of the complaints, I believe that her dementia played a bigger role and realized this process was not going to work for us.
I slowly realized that mom’s dementia was getting worse when my conversations with her became increasingly more difficult. Our conversations were nonsensical and I felt mom was delusional and paranoid. Not just memory loss and confusion, but I felt mom was starting to hallucinate. Her stories became wild and the lines between dreams and reality were getting blurred. I knew she couldn’t stay in her home any longer.
That’s when I went over to their home, packed a few bags of clothes…never to return. That was eight years ago.
Not feeling that I had the capability to care for my mom in our home, with her special needs, and dad who was coming down with dementia himself, I found them an assisted living facility near my home. I toured several facilities and chose the nicest one I could find. It was one year old, close in proximity and they were able to care for both my parents needs. I moved them into a spacious one bedroom with a kitchenette and private bathroom. The change was dramatic for dad, easier for mom who was ready for this environment and needed the extra care and attention.
They stayed at the first assisted living facility for three years. The facility had about 80 residents along with a memory care center. They lived on the assisted living side. The facility had many activities, outings to restaurants or just a drive around town. During my moms stay, she fell and broke her hip and that was the beginning of the end of her mobility. The cost of the facility for two people was drastically rising each year and became unaffordable for us.
After three years, we moved them to a small home run by a husband and wife. My experience at the small home was awful and I hated my parents living there. They had no freedom and were moved to the upstairs of the home..unable to use the chair lift on their own and had no access to the outdoors. I felt like mom and dad were being over medicated and became prisoners. Needless to say I moved them out of that horrible home ASAP.
I moved them back into a larger facility, a full memory care center that was brand new. It was close to my home and felt welcoming. We liked the center as did our parents. Mom and Dad were thriving and became stronger over time. They had freedom to move around in a large space but still received personal care. We have always kept them together in the same room despite a difference in their mental state.
Unfortunately again…the price escalates each year beyond a manageable level and we can no longer afford to keep up them there any longer so I have to move them yet again. They have been there two years.
Here we are almost eight years later and they are moving to their fourth home. This is another large facility with about 50 residents and it has an assisted living side and a memory care side. It is located further from my home but appears to offer them all the same advantages they have now…for a lower price.
After almost eight years of dealing with elder care, here are few things I want to pass along to you about the financial aspect of elder care. In hindsight, knowing what I know now, I probably would have chosen a different financial model of senior care. Let me explain.
The Financial Aspect of Senior or Elder Care
There are four categories of residential care communities, and each is referred to by many different names. There are also different financial models of these care facilities. Let’s discuss.
1) Independent Living / Senior Living – homes within a complex that offers transportation, security, and recreational activities, but no health care services. These are typically the 55 and over communities. You are purchasing a home where everyone is at least 55 years old but as you age, there is no assistance with personal care.
2) Assisted Living – residences provide help with activities of daily living, including basic health services, recreational and social activities, but not skilled nursing care. This model does not come with a “buy in”, you pay monthly fees for an “apartment” in a facility for as long as you need the care.
3) Skilled Nursing Homes – residences with 24/7 care by licensed health professionals, including all housekeeping, medical, and social needs. Again, there is no “buy in” you pay monthly for as long as you need.
4) Continuing Care Retirement Communities – residences that provide a continuum of care from independent living to assisted living to memory care to skilled nursing. These communities are designed to enable seniors with progressively declining health to remain in a single residential location or give healthy seniors the peace of mind that all their future needs are covered. This model comes with a large “buy in”, similar to purchasing a home (in the hundreds of thousands) and will allow you to move to different levels as you age. For instance, you go in at 65 and live independently, then move to “assisted living” then to “nursing care” etc. In addition, there are monthly fees with this model, but not nearly as high as the all assisted living model.
How to Choose the Best Financial Model for Your Parents and Elder Care?
What is the correct financial model for your parents? It’s impossible to know. What is their age? How is their health? What kinds of activities do they like? Are they social? Sort of like life insurance, you are paying for the “what if and the unknown”.
But I can tell you, in our scenario and in hindsight, it would have made more financial sense to buy into a continuing care community. People are living longer and longer these days and the cost of private elder care is astronomical. To date, we have spent well over $500,000 on assisted living already and still going. In hindsight, we could have bought into a continuing care retirement community for less and not had to worry about their changing needs and moving them every few years for financial reasons.
Other Things to Consider when Thinking About “Assisted Living”
Having dealt with assisted living facilities for over seven years, I have learned a lot about what goes on behind the scenes. Having watched the boom over the last several years, I see more and more new facilities popping up around our area. There is a HUGE need for elder care! No doubt! But let’s not forget, it’s a business and these facilities are in it to make money. Period.
My Biggest Financial Tips when Choosing Assisted Living and Private Elder Care
Here is my biggest financial tip to you about private elder care. You can negotiate with these facilities! That is right! Negotiate…negotiate…negotiate! What is written on paper is not set in stone. There is wiggle room…remember this is a business and these facilities want to fill their beds. The fact that more and more assisted living facilities are opening up…make negotiation possible.
On the flip side, if there is a long waiting list of people trying to get into a particular home, or there are a lack of assisted living homes in your area, then your chances of negotiating aren’t so good. But from what I am seeing in our area, new facilities are opening up, the competition is driving the cost down and making negotiation possible. I don’t want this to come off like haggling to buy a car…after all we are talking about our parent’s care…just remember…it is a business and can be treated as such. These facilities are in this to make money and you don’t want to be taken advantage of…
- Let’s take for example the “move in fee”. I will negotiate for the facility to waive the fee or at least apply the fee to the first months rent. You would be surprised…at how many will do this…ask and you shall receive 😉
- The monthly cost of the room – negotiate the monthly cost. Many facilities will offer a discount to our veterans…make sure you ask! This can save you thousands.
- Level of care – many assisted living facilities have levels of care and charge you based on how many things they need to do for your loved one. Typically there are four levels. The fourth level is full assistance, including the need to feed your parent at each meal. The levels of care are harder to negotiate and the cost can be increased anytime the facility decides so. Just be vigilant about this and pay attention to what is going on and don’t just accept what they are telling you.
- Medication Management – This one kills me. Assisted living facilities in our state do not allow a resident to even take a tylenol pill on their own. So if your parent needs any medicine, the facility tacks on another charge to do so, usually several hundred dollars a month. Make sure you are getting what you pay, try to negotiate this down.
How to Afford Private Senior Care?
I don’t have the answer to this, I wish I did. Every month, I gather up rental income, social security, and retirement income to make the monthly payment. We are lucky to have those extra avenues of income to pay for our parents continuing care.
I hope all the information is useful to you, if you are in a similar situation. I just wanted to let you know my experience of dealing with assisted living facilities for years. We also live in a very expensive area of the country and the cost of assisted living in extremely high. We want the very best for our parents and want them to live a happy life in their senior years but we have to consider the financial aspect of their care and figure out how to pay for it. If you start down the road of assisted living, you could be looking at spending $1,000,000 dollars after all is said and done for ten plus years. A lot to think about…..
Is Public Senior Care an Option?
Up to this point, I have only discussed private elder care and have not touched on public care. I don’t know as much about it, but from what I have researched…you basically have to be penniless to get any state assistance. If you have any assets at all that can be used, they will be taken before the state will provide any assistance.
It boggles my mind when I think about all this…I don’t understand how the average person can afford private elder care. I hope future generations will not be burdened with these issues. I know after what I have been through…there is no way I will leave this emotional and financial burden to my children. We must plan for our own futures and not rely on our kids…
Have you been in this situation, how did you handle it?
Denise
xo
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Great tips, thanks for sharing Denise!
Hi Mel, thanks I hope it’s useful. It’s such a hard decision to make, I’m hoping I can shed some light and make it a little easier for those in the same situation.
Wow Denise……what a lot of decisions you have had to make! I’m lucky in the sense that my mother even at 93 is still able to manage in her own home, with my assistance, as I live 3 blocks away. None of my siblings live in this area though, so it’s all up to me. We are different here in Canada in that we have socialized medicine (which can be good and bad), so the nursing homes level is covered by the government, but you pay extra of course for a private room, but it is still manageable, around $3,000 a month for the privates, and that is with full medical care and all meals. The basic is around $1800 I think. The retirement facilities/assisted living facilities are similar but the cost is up to the individual. We did look at one that had both sides if you needed to progress in place, (the best option IMO like you said to avoid all those moves) and it was nice, staff lovely but it is unique in being a non-profit, so of course a long waiting list for the nursing home side, but if there is a home crisis they try and move people to the top of the list. Some of the private for profit ones retirement homes are crazy prices – there’s one in our town that was built 3 years ago is still sitting mostly empty (30 out of 130 units rented) as no one will pay what they are asking – $4000/month for a dinky apartment, one meal a day and no medical services. But like you said, they are open to negotiations just to get clients in, but then they raise the price after a year, so a few people I know there have moved out. They would be better to sell them as condos with a condo fee, as another home here does, then your estate at least gets some of the money back. It’s a complicated issue, and not an easy decision to make. We are forward planning, and in the spring may check out a few more retirement homes. My mother does not qualify for nursing home care, (lots of government agencies and paperwork for that), but it seems easy to get into a retirement home, but the nursing home list is long. I know how fortunate I am that my mother is still alive (most of my friends have lost their mothers), and able to cope on her own, and I will try and keep her in her own home as long as I can. For one thing, she paints so needs the room for all her art and studio supplies! Another issue we have here is we have such a shortage of medical staff, aids, RPN’s, personal support workers, , that sometimes the care isn’t what it should be, and some homes have a better reputation than others, and like you said, it’s profit driven! Thanks for posting, as people need to be thinking about these issues in advance. Sorry this is so long.
Hi Joni! Thank you for the well informed post about how senior care works in Canada. Wow, quite a difference than the US. I am amazed that your mom is able to live alone..my mom can’t do anything alone except feed herself. Yes all these facilities are profit driven which makes it hard with very little to no assistance from the state unless you are completely penniless. You are very lucky, and so is your mom for having you so close by and able to help. Thanks for sharing your ideas my friend.
Good luck navigating the system!
Thanks! Not easy Joni…but experience has helped 😉
Denise, this is such an informative article. Gene & I both have been through this with both sets of parents. We were just lucky they were in a state that the cost was not so high plus many years ago. Because of this, we both bought Long Term Insurance in our early 60’s when rates were reasonable. They premiums have gone up in the last 5 years but we have lowered some of our benefits. It will still take the edge off of what the cost of elderly care will be for us. This is why we are still in our house because we can’t decide where to go. I know we will have to make that decision soon (or it may be made for us which actually would be easier). Thanks again Denise for this article.
Thanks Donna. I know you and Gene are properly preparing for this, I wish my parents had the foresight. Staying in your home is the best idea…do it as long as you can, and with help from your family…I know you are both well taken care of my friend. Hugs!
I forgot to say that we met your Mother at your Christmas party & she is such a lovely lady. Your parents are very lucky to have you & your brother overseeing their care. It has been a long & hard time for you.
Thanks you Donna. We are lucky to have them too 🙂
Oh Denise it is hard isn’t it?! This is a great article though, and will help lots of people! We’re so lucky to have both our mothers in buy-in continuing care communities – honestly they’re like resorts! Beautiful and with so much to do! I keep telling my son I’m going to be living in a tent in his backyard, but I hope it really doesn’t come to that! 😉 The time to plan is now! Thanks for bringing up what we’re all going through or will go through at some point, and for your great insights. Take care over there! ❤️
That is the right way to do it Barbara, very wise choice. If I had it to do all over again…I would pick that type of community. Back years ago…I knew nothing about all this, learning as I go. Then again hindsight is 20/20 right? So glad you have that taken care of…good for you…big burden off your shoulders. 💕
I’m catching up on my blog reading and just saw this post. Thanks for such an informative post! My mother in law is in a continuing care facility and that has worked fairly well. She is in the independent living, but has aides three days a week to cook a few meals and help her to the in house hairdresser, take a shower. It’s very expensive, but she was the most frugal person I’ve ever known (thank goodness). She chafes at having an aide, understandably, but it’s made a difference in her well-being. The experience has opened my eyes to what we should be doing to prepare for this stage of life. It’s concerning.
Hi Bettye, it’s very concerning. In hindsight a continuing care center would have been the best choice for us..but you never know. All we can do is look forward and learn so as not to bring this upon our children. Thanks for reading.