It is an excellent book.

My siblings had no interest in helping me find a place for my mom. I (We) chose a really nice private facility that my mom really liked. Signed her up and moved her in and then told my siblings there will be no inheritance.

Before my husband took a swift turn for the worst there used to be a Caregivers forum on here. Most of the people knew what you were going through and could and did give good suggestions. It also gave me a place to vent without family seeing it.

One of the things I remember is several suggested was to tour several different types of 55+ living situations. Always observing how the residents interacted with staff. Having a place already selected helps if there is a sudden problem. Look for adult day care to get your loved one used to being with people again. Some do provide transportation but even just knowing that you can have several hours to yourself with someone there that knows what to do if there is a problem can help you. Also look at Respite care as you visit places. The transition between home and new home can be easier if your loved one actually asks to stay.

I'm not sure how far along your mom is in memory loss, but a common "fiblet" is to say that the house has to be painted, or there was a plumbing leak, etc, while the loved one was away, and would just be staying "here" (whatever facility it is) while it's getting fixed. But, if your mom is only forgetful in the turn-on-the-oven-and-forget-to-put-the-lasagna-in way, then she'll be on to you.

I do see Michelle cross posted this on 'Care Givers'. I'll have to check that out. Even if it's not active now, I'll bet there are a lot of older posts with good info.

Forgot to mention I bought a little security camera that connects to a smartphone with an app. It's in her living room where Mom spends most of her time, and I can check in on her throughout the day when she's alone. We've told her it's for security purposes a number of times, but she usually just forgets that it's there. It has sound and night vision too.

P.S. My mom has macular degeneration too - it runs in the family, sadly, but she's managed to stave it off with injections of some drug I forgot the name of. She's been getting them for years. I fear they've become less effective now.

Apparently she’s angry at me.

We lash out at those closest to us, no?

Oh boy, I can identify with all of you. Soooo sorry Michelle you are going thru this. My mom is 99 and in her own house. Some dementia, but not going to burn the house down yet. I am a single female, only child and it gets hard keeping up two houses. Neither of us would want to live together, as I am across the street. I am lucky that my daughter helps out with all phone calls for her, banking, mail sent RX's etc. She recently got mom an automatic timed pill dispenser. It is great, cause we had a couple of episodes where she woke up from a nap and thought it was the next day, ate breakfast and took her morning rx again.

I know that a nursing home might be better for her, but until she can't go to bathroom on her own or walk, I will keep her home. But it sure does get hard to have a life, as you all mentioned. Everyone has to decide for themselves if/when it is time for a nursing home. I am beginning to see a big part of it is what WE are capable of doing without losing our own way.

Ladypat, I never thought it was horrible being an only child until my mother was at the end of her life. At that point it felt like child abuse ;-) Sending you hugs, too.

I'm sorry for what you are going through and for every other person (mostly women) who are also trying to survive caring for a family and an elder.

The bottom line for me is that if caring for your mother kills you or renders you unable to do any more, what will happen to her? She will go to a facility whether she wants to or not. Why sacrifice your own life when being in assisted living is a great option for both of you (whether she knows it or not)? You are not doing her any favors by potentially shortening your own life, or burning yourself out.

One of the advantages of being an only child is not having to live with the disappointment of siblings not doing their share. Your family is lucky to have you.

Michele, I hope it works out, too.

Good luck to all of us who are dealing with the care of another. Until I was in this position, I never noticed how many caretakers there are. Now I see us everywhere. Taking mom (sometimes dad or spouse):to the market, to the doctor, to the hairdresser. I am so fortunate to be in a financial position to hire the help my mom needs. If I told you the total amount for one year you’d faint, at least I nearly did.

As we baby boomers age there is going to be a tsunami of people needing care. It’s scary.

Buy this book:

"why Can't we Talk About something More Pleasant?" by Roz Chast.

https://www.amazon.com/Cant-Talk-about-Something-Pleasant/dp/1632861011

A little humor and knowing that you aren't alone go a long way to easing your burden.

Although it will sound heartless to some that quick trip to the hospital with the doctor stating that the person can not return to their home has been both a mental and physical life saver to many. It takes the decision of placing out of your hands other than finding a place and relieves the guilt that many have in thinking they have failed when they think or even know that the person they are caring for is beyond what they can give an not break themselves.

It does help if you actually talk to anyone who may care for you including yourself about all of the what ifs. Most women especially has seen what happens when caring starts to damage the person providing care. It lays the groundwork for any eventualities even if not remembered. It also helps to sooth the mental anguish of those required to make the decision when the time comes. Always have the thought of what happens if I am not there to handle things.

The only good thing about being an only child in this situation was not having that sibling to criticize from a distance.

Best wishes to all having to deal with these difficult situations. As others have said, you need to give at least equal priority to the well being and happiness of yourselves and your siblings or others affected by these trying circumstances.

"I'm sorry for what you are going through and for every other person (mostly women)...."

This is a curious comment. Last time I checked, men also have elderly parents whose well being and care need to be addressed and attended to. Women don't have more parents then men do.

Women are more likely than men to take care of things like cleaning the personal areas of especially another female's after bowel movements which is why most put the "mostly women". There are some men that will do it.

Maifleur, there are a lot of men who are capable of being nurturing to that degree. They can care for infants and elders. Some do those kinds of jobs professionally.

Anecdotally, I agree with Oly, women tend to take the lead on caring for family members, from their own parents to their in-laws.

Elmer, there is a fair amount of scholarship on all the family/household tasks that fall on women even if they work outside the home. Consider how many women chose to leave the workforce due to covid demands placed on families.

No where did I state that men are not capable of doing the cleaning only that women are more likely to do it. I should probably have stated it is included in people's minds as "women's work" only to be done by a male if a woman is not available.

zalco, I'm not sure how the discussion went from managing the affairs of and the care and placement of elders in appropriate residential circumstances before it's too late, before switching to wiping butts after bowel movements but the latter wasn't what I was addressing.

Historical role stereotypes have fallen by the wayside pretty much, even with people I know of my age (still in my 60s), haven't they?. Maybe not for some.

I agonized and got annoyed and frustrated while attending with my siblings to my parents' needs in their declining years, my wife with hers. Neither one of us ever had to wipe anyone's butt.

Women are the vast majority of caregivers, to spouses and to dependent elderly or otherwise impaired family members. Many women also have more additional stressors -- needing to balance their other 'caring' roles for other family members. (Just google "gender in caregiving' for stats.) There's also some indication that women spend more time and emotional enegry in caregiving, while men may be more pragmatic 'task organizers' -- and they may have more financial resources to get help. (My guesswork here.)

Agreed. Just because there are more men taking on caregiving roles nowadays - and that's a good thing - doesn't mean it's become an equal number, or even approaching that.

Also, looking at it anecdotally, it seems that majority of elderly parents being cared for are women, which makes sense, since women tend to outlive their male partners.

Almost forgot to mention that my mom can't administer her own meds either because of her memory loss. There are so many daily tasks that we might take for granted until we're confronted with a disability that prevents a person from accomplishing them.

I had mentioned one day that I was going to defrost my manual freezer, the way she had taught me, and I'd do hers afterwards. The next day the caregiver told me their ice cream was a little soft. Two days later the caregiver called to tell me I needed to get new ice cream and call the repairman for their freezer. No, mom had turned off their manual freezer to defrost it, but had closed the door and not done anything else about it. "Oh no, Mom, was there water all over the floor?" "Oh boy was there ever" she laughed. I think that's when everyone stopped letting her use any appliances. It was kind of funny, except of course for the caregiver who cleaned up the water. She laughed later.

For the "curious"...

"In America, according to the Caregiving in the U.S. 2020 report presented by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute, 39% of family caregivers are men and 61% are women. ... So overall, women's responsibilities in elder caregiving are actually growing even more disproportionate."

source

What's curious is how some people consistently like to read selectively and sometimes find things that aren't there, that suit their own biases and purposes.

As I said before, this thread seems to have had sharing of two kinds - those who care for elders in a hand's on way in a private home, and those who care for elders by managing their affairs, making sure they get the care they need in an appropriate facility, and other things. I questioned your first comment suggesting that "mostly women" need to deal (generically) with care of whatever kind is provided as being incorrect. I don't think that's the case, it certainly has not been my experience. You chose to ignore that.

Now again, if "caregivers" (undefined as to what that means) are in a 61/39 female/male ratio, that means that there are more women then men but not "mostly" women, as I understand the meaning of that word. You stat supports my comment. Also, what about that stat says that the percentage of women so engaged is "growing disproportionately", your most recent comment above? Do you have information about these numbers over a period of years and how they trend? I would guess the percentage of men so involved would have been growing but I don't know. If it's been constant for awhile, the growth would be proportional, not disproportional.

I don't think you can easily separate caretaking that way, Elmer. It just doesn't work that way. My experience is that care taking is a combination of hands on and hands off care. And the hands on care is monumentally more difficult.

Let’s migrate the caregiver gender debate to another thread, and return to supporting and relating to Michele’s vent.

"I don't think you can easily separate caretaking that way, Elmer. It just doesn't work that way. My experience is that care taking is a combination of hands on and hands off care"

You have your experiences and I have mine. One doesn't have a higher standing or automatically rate higher on a difficulty scale, they're different ways of doing the same things. Spending more hours or providing care hands-on doesn't necessarily create more anxiety, aggravation or difficulties.

In fact, being on the scene can be easier in some ways compared to trying to handle things from a distance. We handled things from a distance with all of our parents and I wouldn't suggest it was necessarily harder than it would have been had they been nearby because I don't know. What I do know is that it was incredibly difficult in each case, for different reasons, and part of the problems encountered were because of having to handle matters from a distance.

These circumstances are very difficult no matter what the specific factors are. I've heard of these situations described as being a role reversal, in that parents provided care for us when we were young and we provide care for them when they're old. And, of course, when doing so, all of the elder's worst personality quirks get emphasized and enhanced with the development of new ones typical of people losing cognitive ability, frustrated with their diminished circumstances and less interesting lives, and more and more. Or, just getting plain old grumpy and difficult.

Oh, come ON, Elmer! 'Hands Off' is SO much easier -- as long as you have financial resources. You just pour some money on it; pay someone else do the nitty-gritty. To use bpath's example, YOU are not the person mopping the floor, dumping contents of a freezer, etc. -- physically coping with the full-sized adult who requires more supervision than a two-year-old, while also demanding your respect as your spouse or parent.

Looking for a comparison at the other end of life, I'm thinking of the parents who 'raise' kids by turning them over to a baby nurse, then a nanny, and then send them to boarding schools and summer camps. No muss. No fuss.

Anyone that takes someone elderly into their home unless they have live in 24/7 help should expect to do personal cleaning. It will happen and if not tended to quickly can lead to skin infections that will only get worse. Just changing the adult diapers is not enough to remove the bacteria from the skin.

It can also lead to urinary tract infections, which can affect behavior. And getting a “clean” specimen to confirm it is difficult. So hopefully you have a doctor who is willing to take your word based on experience that an antibiotic is needed, without getting a specimen.

This is getting graphic!

Sorry chisue, we're obviously coming at it from different directions. Including your comment about people who "raise kids....) in a way that seems to not be acceptable to you. Here's how to think of that - consider a couple who both work and aren't available to provide childcare without help. What do you suggest they do?

Here's my perspective - people who personally care for family elders, when they can afford to do otherwise, may think they're enhancing their parent's lives but too often do so to the detriment of their own. Especially when parents get to a point of having special needs - whether medical or the many who suffer mental deterioration, starting down the slide of significant forgetfulness to dementia or Alzheimer's disease. Many elders need professional care, no matter what is involved. It may be a financial hardship but how much is it worth to protect one's own life and sanity?

My wife and I were like-minded, driven by the mutual view that having either of her parents in our home was a non-starter. Was not going to happen. Her siblings felt the same way for themselves. Call it personality issues. My parents died from medical issues at ripe old ages but each while still able to live safely and happily independently.

I think blfenton's experiences are thoughtfully enlightening - from her own words, she's not necessarily someone who vacations annually on her yacht in the Mediterranean but there were major quality of life issues - her own, her immediate family and the attitudes of siblings - that drove her decisions.

No better described than when she said, above, that she "told my siblings there will be no inheritance."

It recalls the cliche - "You may think you can't afford to (do something) but it may be that you can't afford not to."

Come on kids. Let’s stop arguing!

I just got back home. Gave my sister the organized pills for the next two weeks. She didn’t really pay attention. I expect a call when she gets our mom down to her home.

It was high time they listened. My mom is declining rapidly.

My brother actually said to me after spending the day with her that he doesn’t know how I did it. She is not a fun person to be around.

Anyway, we need to figure out what we’re doing. At least my mom will be safe for a week. My sister and husband are both retired.

I used to hate the "I don't know how you do it". What I heard, intended or not, was "I'm glad you're doing it and not me". Sometimes I had a bad attitude.

Yes, you'll hear from your sister, but that means she's paying attention. As long as she's doesn't say "I don't know how you do it", but rather "tell me how to do xyz". THEN she's on board.

Good luck Michele. Do as you decide to do but don't try to be a hero.

While I have seen elders thrive after being placed in homes. I am also aware that government assistance for senior living homes may not be available. Independent senior living places because they used government money must have some financially assisted places. Assisted living places are not eligible for financial assistance in many areas. It is the time between living independently and needing a nursing home because of the high cost where families must make other arrangements including taking the person into their home. Even with the recent changes with in home health care if there is not a medical reason for that care families must make a decision as to who will care for the person and where the person will live. If there is enough money then placement is an option. I do wonder what people think families should do when the person being cared for is not sick but needs supervision.

"It is the time between living independently and needing a nursing home because of the high cost where families must make other arrangements including taking the person into their home."

This may have been your experience, it may be the experience many have, but it's not the only possibility and it's one possibility that many people do not experience.

A friend of mine's mother is in good physical health but started becoming forgetful about two years ago and a bit less capable. He and his 3 siblings (brothers and sisters) talked it over. None wanted their mother living in their own homes but they agreed she would be safer not living alone. They set up a rotating schedule where each would do a 30 day shift in rotation. That way, each would be "on" for one month every four months, staying with their mother to do the shopping, generally attend to her needs (she was self-sufficient in personal hygiene matters) and be around to help deal with whatever came up. Following conversations that began after each had had done one shift during the first 4 month cycle, by the end of the second 4 month cycle (8 months from the start) they all agreed that their mother needed to move to a senior residential facility, they found a suitable one, and two of them moved her in. Why? Because each of them realized that they didn't want to spend 3 months a year living with their mother. This is a close family where the siblings tend to agree and everyone gets along well. They agreed it was a good idea but not something any of them wanted to have to do.

They sold her house (not in a particularly high cost real estate market) and agreed they would be willing to split the costs of her care when that money runs out, if it does.

Many oldsters own homes that have significantly appreciated and even in the absence of personal savings, that equity plus monthly social security can cover housing and care for a long time.

Michele, they are lucky you've been doing it all, but also lucky that you are organizing things so THEY can do it. When I was helping elderly relatives (an aunt and cousin), one of my other cousins who wasn't involved with them at all said, "Tell me what I can do." It felt just as burdensome to have to organize things so someone else could do them as to do it myself. I told her to get over there and figure it out. (They had live in help, so there was nothing in the actual hands-on caretaking needed). She wanted a discreet task or two. She could have taken them out to lunch or weeded the garden, or fixed my aunt's hair, or asked our aunt and cousin what she could do for them. Go sit down and visit. She never did.

edited to correct spelling of Michele's name

One thing I have not heard mentioned was adult daycare. If the patient is still somewhat mobile It is a good alternative. It does give the caregiver a break to attend to their own personal physical and mental health. We had one on campus at the VA I worked at. Of course it was mostly men in the daycare, but it gave the (usually wife) the freedom to go shopping, go to the hairdressers, etc, or just do nothing and recharge.

Oldsters do have homes that have appreciated in value. The $18,000 houses just south of the freeway that were built right WWII are now selling for $89-95K many are one owner houses. Eventually as one of our former mayor's found out the money from a reverse mortgage can stop. Where is the spouse to live if the home is sold and all of a sudden there are both nursing home/assisted living charges and rent for the spouse until Medicaid can kick in and cover the nursing home charges? In the good olde days before Medicaid would pick up the cost of care families did spend most of their money caring for elderly relatives. It was not too bad when there is one but if you think that there may be four or more based on two parents for each spouse. Then any extended relatives. When my grandmother went into a care center in the late 1950s all the extra money available went for the two months she was there for over a year paying it off.

Function in 2015 when I looked for my husband adult daycare started at $45 a day. Beth Shalom on the other side of the city was free but there was a 14 month waiting period for members.

I have read most of the comments and realize the difficulties many are facing with aging parents. I was an only child and my father died relatively young at 71 leaving my mother alone for 20 years. I lived over an hour away and visited often but wasn't there day to day. She had friends and was active in her church but began forgetting things and her neighbor (and her lawyer) told me she needed to go. That's when I wanted siblings. She and my father had built their home in 1950 and she loved every inch of it so it was like pulling teeth but I did get her moved to a nice nursing home a few miles from me and I visited her every day. I put her in independent living although that was not realistic. I had to call her every day to get her to the dinners and hair appointments. She didn't make friends there and I think died of loneliness missing her old life and living in a strange place. It won't be long until my husband and I will be in this situation. Husband's heart surgery last week and my severe laceration make me realize that. My kids stepped up for these events. I hope they do in the future although I suspect my daughter will do more than her brother.

Just to answer Elmer about what I think a pair of double income people should do instead of turning their offspring over to hired help.

I think they shouldn't HAVE kids if the children are such a low priority. Why do they want any? (Because 'everybody' has them? To care for them in their old age??? hahaha)

Hi Michele, Just though I would add my voice here too.

Just happen in here by clicking on different link than I intended. You
are right that caregivers are often the least noticed and appreciated.
You need to schedule a day or at least a few hours on a regular basis
for yourself and get a massage, go to a spa or whatever you like and can
afford that will give you some "My self" time to fall back and regroup.
Care givers suffer from burnout because they over do out of
responsibility or other motivations that never let up. Take care of
yourself.

Chisue, I hope Michele forgives me for going so far off topic, but really plenty of people who go away to school are quite happy about it. Having nannies and boarding schools in your upbringing is not a sign of neglect. I know plenty of children whose stay at home parent is more pre occupied with vanity projects and their social circle than they are with providing a consistent, safe environment for children to thrive.

It's not what I chose for my kiddos, but it's a perfectly viable, tried and true option.

Michele, I don't know where you are located, but many areas have some sort of care-giver support groups. Poke around your available sources, starting with your county Health Department/office of Senior Services. Sometimes religious groups have such services, or there are other non-profits like the Alzheimer's Association or other specific diagnosis organizations. There are some non-profits who offer extended services for a fee, like the place in the Philly area that also offers weekend retreats for small groups.

https://nancys-house.org/

If you can find a support group, you'll find it very useful.

Stay strong.

"Just to answer Elmer about what I think a pair of double income people should do instead of turning their offspring over to hired help.

I think they shouldn't HAVE kids if the children are such a low priority. Why do they want any?"

I think there's been a change over time between prevailing practices and attitudes from when you were of child rearing age and now. It's not unusual for both members of a couple to actively pursue careers. Or, with lower socio-economic folks, for both individuals to need to work. Child care provided by a member of the extended family may not be available (people are more mobile and move more than they used to) and so in those circumstances - what are the choices?

Summer camps? Gives kids a break from their parents and vice versa. Some of my best memories of childhood were times I spent at camp, only a few weeks per year. How about for you?

But (PS)

There's no one solution, no one answer to any situation or question. People do what works for them.

It's the *priorities* I question, Elmer. Of course we know 'enrichment' and summer camps can be great for kids. What I see, though, in my affluent community, is parents who are so busy climbing ladders that their children are fobbed off on hired help from infancy. We have kids entereing pre-K who are only fluent in the caretaker's lauguage. Parents are working night and day to afford the very best *boarding schools*. (Any educator knows that the best teachers in the world are useless without a grounded kid -- firmly attached to a family that *values him*.)

There's a problem when 'kids' are viewed as a tick on one's resume, just as 'married' was a requirement for men when they were the majority workforce. I see people prioritizing social and business status *instead* of investing in hands-on with their children. It's about prioities, balance.

Jeeze some people just have to have the last word and don't take hints very well.

I'm not sure why or how you have developed such a polarized attitude. I don't doubt you're sincere in your views but I will say that what I've seen and experienced has been quite different.