Many people come to this forum when they are desperately in need of help. It would be wonderful if people could prepare for caring for the elderly and would avoid most of the confusion and frustration that most people feel when they are overwhelmed by caregiving.
There are tons of books on self help, relationships, parenting, etc. There aren’t nearly as many books on preparing for how to plan out caring for the elderly. Would the public read books on aging? I don’t know if I would have earlier in my life so I would have been better prepared for caregiving. Wouldn’t it be nice if adult children knew that facility care is necessary for many of our elders?
Some are speaking out. Rob Lowe spoke about caring for his mom with cancer. I was surprised to see a float dedicated to caregivers at the Rose Parade. But for the most part, it isn’t a topic that is addressed on a regular basis.
Do we not want to know about the elderly when we are younger because it reminds us of our own mortality and is depressing?
What about the single person who has no spouse or children, is there anything to help them prepare for growing old alone? I feel for them.
Does anyone have any thoughts or suggestions on this? I think about it from time to time and wish that somehow more people would speak about what is involved in caregiving to the elderly.
So many people are living very long lives. My mom lived until the age of 95. I cared for her for 15 years in my home. My husband’s great grandmother lived to be just shy of 102!
Look at how many independent living, assisted living/memory care facilities and nursing homes are in our world today. It seems like there should be more education than there is on aging, or in particular, ‘caregiving’ for the elderly.
So, I just googled ‘caring for the elderly’ and it’s interesting what popped up. Still, I wonder if we should be prepared sooner in life. I have already told my children that I do not wish to burden them with caring for me. Some children are taught from young that they are responsible for their parents. How sad!
Hahaha, I don’t think that you are crazy! In fact, I think your feelings are completely normal.
Not only that, you’re absolutely correct! Things can change in a heartbeat when it comes to caregiving. We should know that the situation always gets more difficult, never easier.
Wishing you peace during this difficult time in your life.
crazyincaroline - you made me laugh. 🤣🤣🤣
Any attempt I make at trying to answer this question right now will turn into the ravings of a mad woman because things have gone from bad to worse to unimaginable here with my mother, but one thing I would tell them is that no matter what they promised, no matte how much they meant it at the time, the day will come when they may have to break that promise. Nursing homes are filled with people whose children had to break that very same "never" promise. We make it without understanding what it means, and for the most part, they don't understand what they are asking for either.
I guess a good answer for the question you asked would be to google "caregiver stress" and also to find and take whatever help they can get.
I'm new here. This is my first comment. This site is part of the reason I am not dead or in jail.
Everyone thinks their parents are going to age gracefully and not require real care.
No one thinks dementia, incontinence-whatever the issue will happen. Even the oldies themselves think nothing will happen or that family will be waiting and eager to step up and lend a hand. I thought my sibling would be around to help.
No one wants to come to terms that they might spend their retirement years caregiving. If I had really understood what POA meant I wouldn't sign the dotted line today. Also there seems be to a lot of not so great parents out there who think that even though they failed in their duties and responsibilities of parenthood they are entitled to everything from their kids.
You are a kind person to act in such a responsible way. I wonder if people avoid planning for their future because it’s too disturbing for them to think about their own mortality.
Thanks for the info on the PBS documentary. I plan on looking at it.
There is an associated website with resources to get started on making plans. https://www.nextavenue.org/fast-forward/
Watch the movie The Savages with Laura Linney and Phillip Seymour Hoffman about estranged siblings forced to care for their elderly father. A very realistic look at caregiving.
I have started asking friends and family if they have made any plans for their old age, and what happens if one of them gets ill or worse. EVERYONE of them didn’t want to discuss it! BFF, who has been married 35 years with 2 kids no a large property, told me they didn’t even have a will! I have become the squeaky wheel carping on naming beneficiaries for all their accounts, detailing end of life choices, setting funeral decisions, etc.
I am 66, single with no children and I have been making plans for my old age so family doesn’t have the responsibility of dealing with clearing out my home, selling stuff, etc. I just remade my will and chose a an executor who is young, smart, and will follow my choices. Most of my money will go to a charitable trust. Next step is researching appointing a guardian to handle my affairs if I become incompetent. It's a scary thought but if my sibs and I live into our 90's they might not be capable of dealing with me and I don’t want their kids to have to do it.
My mom had a LTC policy but died from the results of a stroke before she ever needed to use it, My dad died about 50 years ago so I was too young 20ish and partying while going to college. My MIL died about 25 years ago after heart surgery. She was in a "ventilator warehouse" for about 6 months before insurance benefits ran out and they(her kids) decided to "pull the plug" rather than send her home for FIL to care for her. He was in his early 80's at the time. FIL died quickly during a short hospital stay where he was found with prostate and colon cancer that had spread to multiple areas..
I wasn't concerned because who was left for me to care for. I am about 6 years older then my wife, so she should have been my caretaker.
When she had her 5th stroke about 3 1/2 years ago, I thought she would be in rehab 6 to 8 weeks and then back to almost whatever her new normal would be. Then it ended up being about 22 months before she came home. At that time she could walk around the house, get in and out of bed, shower, and other bathroom needs. Then there were several falls each with a short rehab stay. Then another bout of endocarditis with 6 weeks of IV antibiotics which I was doing for her at home. Then after another fall she spent 4 more weeks in a rehab.
While in the rehab she had 2 falls in less than 8 hours which later (4 months) resulted in back surgery. A blood clot formed on her spine after surgery. ( She was very high risk for the surgery but she insisted on having it. After the surgery to remove the clot, she ended up either in bed or a wheelchair, unable to help with transfers.
You guessed it, I did not plan on any of this. I did not plan on her being home unable to walk, unable to dress, unable to use bathroom, (incontinent both ways).
Several people have mentioned OTJT and that's where I have learned it. I never thought "it could happen to us"
I saw how hard a NH and even rehab was on my bipolar wife. She was declining and 3 times she was near death and the NH staff said she didn't need to go to the hospital. Once while on hospice, the hospice Dr's said she didn't need to go to the ER. Each time I DEMANDED that they send to the ER and each of those 3 times, the ER Dr. on at the time said if I had not gotten her in when I did, she probably would not have made, it. That's the main reason I brought her home.
This is a tiring, dirty, depressing, and thankless job. I have stress headaches about 5 out of 7 days with a few migraines thrown in just to keep things fun. I am not supposed to lift over 10 pounds, pull, bend, stoop or reach due to a back injury in 1996 and 2 failed surgeries. However to change a diaper for a 150lb woman takes most of the restriction listed.
Had I known how difficult this, (CARE TAKING) is, I would have devoured every book, class, TV show, movie and YouTube video available.
I do not think that most of us planned on having the role that we now have. I don't think that most of us expected our role to last anywhere near as long as it has. And I do not think that most of us expected would have listened to much advice before we began living the life we now find ourselves in now.
Great suggestion! We have no idea. My blood pressure was through the roof in my caregiving days. Not to mention the hours that I spent in therapy as well. Physical and mental health are effected.
That would be awesome to have seniors take those classes. Can I add one more? The health risk on adult children being caregivers!
Great idea! 👏👍
Exactly! People need to know what they are getting into. It’s so hard and none of us are really prepared for caregiving.
If there was more awareness, if people talked about it more (outside of these forums), then maybe we could get more assistance.
In the "old days" cancer was considered a taboo topic, that no one dared to talk about. Now, this disease gets so much support. There's tons of cancer organizations, walks, research. Whenever someone I know reveals that they have cancer, literally everyone is there offering help with meals and money.
When someone finally reveals Dementia in a family member, they usually get . . . nothing.
We need more awareness about what caregivers go through!!!!!
Neither of my parents took care of their parents. My parents didn't care for anyone else and didn't plan for their own elder care.And here I am holding my back from moving mom into memory care over the weekend. Had to clean out her assisted living apartment and shove everything into my garage until I can clean it up and try to sell it.
At least I knew I could never live with my father. There were plenty of times I was in tears because I just didn't know where to turn to get him help. I didn't know what help was available and often I received bad information from those who were supposed to be helping. I was always terrified I would make the wrong decision.
Then there were all the rules that you are not aware of. I had no idea about the 5-year look back on Medicaid when my father offered to help my kids with college. I was thrilled for once he was doing something nice. Plus he had mid-six figures in the bank so I was not concerned he would ever run out of money. Then he decides on assisted living and the money went fast. I lost a lot of sleep worrying he would outlive his money.
Now I warn everyone I know with an elderly parent of the things to do and don't do. I wish I had someone do the same for me.
Not that I disagree, but we live in a society where people are free to resist education of any sort if they wish. I can't see your (actually very good) idea taking off, somehow.
A client last week described a medication she has to take weekly, which must be done at six in the morning, on an empty stomach, and the person has to stand upright (I think you can actually sit down, but it wasn't the moment to correct her) for 30 minutes afterwards. Newly blind, she finds it a challenge to manage this but she is coping. Only she said to me: "it makes me wonder, what on earth do they do with patients who aren't able... who can't... who are a bit... stupid?" I laughed aloud and said I knew what she meant but we didn't generally put it like that.
It is perhaps stupid not to think ahead at least a little bit and take some responsibility for your own wellbeing. But you know what they say about stupid.
What if before we/seniors can draw social security, we/they need to take a course to learn what it takes to care for elders. In such a course, seniors can learn:
--when to give up driving
--financial scams to avoid
--the need to declutter
--the need to hire outside help
--the need of their children to live their lives
--why they should not ask their children to do things for them all the time.
--the downsides of moving in with their children
--the need for POA, will, etc.
--role reversals
--IL and AL of today
These are just a few. There are a lot more I'm sure.
If seniors can learn about some of the above, it will help them to help themselves and not be a big burden on their children.
For my own elder self, my DH and I already have plans in the works, e.g. long term health insurance, bathtub remodel, stair rail, et al when the time comes. We only have one heir and she knows I would never be a burden.
NeedHelpWithMom, in answer to your question, at least some elders do not do any planning at all or very little. So perhaps the elder can attempt to start the planning process much earlier. In addition, you pointed out that some elders are living much longer than in past generations. The planning capabilities of an elder may be limited due to brain functionality, finances, et al IF they have waited far too late to plan accordingly.
My parents and mom's sisters cared for their mother, taking turns. They were pre-retirement, but mostly "empty nesters" and Nana was easy to care for. She passed probably age late 70s. My parents had a LONG and wonderful retirement together! When dad began having issues, mom tried at home, but eventually he was in a NH. She'd often complain about the care and say she could do better, but never did anything about it. I doubt she could've done it, being much shorter, in her upper 80s, with osteoporosis and high BP. For me, I was on the cusp of retiring. Too old and with my own physical limitations to even consider it being doable. So, I did the best I could managing everything instead. I had to learn all about dementia from ground ZERO.
There were times after he passed that she mentioned AL, so it WAS in her plans to move, when she felt the time was right. Enter dementia. All bets are off. She's fine. She can care for herself. AL was akin to a prison hovel in the ground. Despite our own best laid plans, we DO need to be sure those plans take this into account. I've made it clear to my kids that if I go down that path, find a place for me. No way would I want them to even try.
So, even if WE make our own contingency plans, they need to be understood by those who will implement them, but also make sure they understand that sometimes we can try to thwart our own plans! The dynamics in the family can make or break these plans. Siblings might not get along or agree. Relationships may have been broken long ago.
It'd be difficult to list every contingency. There are so many conditions that require help, but also so many situations for families. Lack of funds/planning. Lack of ability, time or space to provide assistance. Very difficult people who need help/care. Different backgrounds for us all - some, like cetude, who follow family traditions, others who are far removed from old traditions, broken and/or abusive relationships, etc.
I never asked them, but when my brothers learned the cost of MC and said "For that kind of money, I'll take her in," I was concerned. Neither had a clue what it meant to care for someone with dementia. Most likely they had vague memories of Nana staying with us. It wasn't full time, she didn't have dementia and she was very easy going. If all situations were like that, maybe. I knew it wouldn't work. Even with a good parent-child relationship, going back to live under one roof is bound in many cases to cause tension. Differences in ideas on child-rearing. Opinions about decisions we make. Complaint or criticism regarding how we clean, cook, etc. Strong personalities will increase those tensions.
I don't think any amount of training could ever prepare us for what might be needed, because there are just too many factors. Someone mentioned how there's a lot of info about pets, but with pets it's mainly what limited treatments are available for whatever condition they develop. Generally we're not going to get criticisms, complaints or brow-beatings from them. We do what we can for them and hope for the best! Every cat under my care who has passed on did so for a different reason. Often they will fight treatment, but it's easier to find ways to protect yourself and get it done vs dealing with a large uncooperative human!
1. Hire Caregivers very costly.
2. Live with someone willing to care for you.
3. Go live in a Senior Home, only if you don't have option 1 or 2.
Best thing to do is save your money so you can live in your own home and hire 24 7 Caregivers or a Live In Caregiver.
NOTHING, however will prepare them for the experience.
I read up on and talked with so many experienced tree planters before becoming one and boy did that educate me. It was the same thing going to teach in China.
We can offer them all the help we can but nothing will prepare them for the personal experience.
I have heard a few public service announcements on behalf of caregivers and I liked them. There haven’t been enough to make a dent. I truly went into caregiving blind. I didn’t find this forum until I was far into my caregiving years.
Great idea with actors or any other notable people bringing light to the subject.
That is a wonderful point!
Firstly, we do not value women/women's 'work' and women are usually the ones who end up providing the care.
Secondly, this country / culture does NOT value human life - as one ages. In some cultures, elders are revered, respected, cared for - If we did, as a nation, everything would be different. We would require higher wages, perhaps similar to those of a social worker/nurse . . . there would be more (and) AFFORDABLE medical care and housing available.
It is a really good question. Caregiving is 'more in the news' these days although it requires a huge shift in national consciousness - to change - to honor our elders.