My mother cannot walk and has dementia. I live with her as her full-time caregiver. It has its challenges, but it's fine overall. She has great doctors, and we have home health care that comes in regularly. Some relatives--mostly my mom's sister--will NOT drop it that they think my mom should be in a nursing home. For example, I got this email from her today--with an attached ad for a dementia-care facility:
"Came across this ad in a magazine today. It's appealing because they try to inspire purpose which I feel your mom could use. She always says she isn't doing anything. I know you are doing a good job of caring for her physical needs but I still believe she needs skilled care with people who know about various dementias and can treat it medically, physically, and spiritually. We once had a friend who was in a place similar to this and she progressed well.
Let me know what you think."
I get these types of things pretty often from her and others. I am doing the best i can to honor my mom's wishes--we tried several nursing facilities in the past year and my mom hated them all. She hates rules and schedules. So we made the decision to buy a house big enough for us and things have been going really well.
But my job is hard--I don't need these damn passive-aggressive messages every week. I was feeling great when i woke up today--now I've spent the last 4 hours feeling hurt and angry. I would like advice about how to shut them down. Thanks!
Your story is almost too much to be believed but I will assume it's all true, I have no way, nor the desire to investigate it. But you must understand that it's not realistic for most people to make the sacrifices that you have. You are to be commended, and yes many people do caregiving at home until the very end.
I'm not mean spirited, a bit of a smart a** maybe, but you come off as a braggert about all these amazing caregiving miracles you have achieved and it pisses people off. Most of us are not capable of miracles and will put Mom in a nursing home the first chance we get.
This is far from the first time this issue has been debated here and elsewhere. As snarky as I can be, I appreciate your participation in the debate, you certainly have some experience and knowledge to share and I hope you don't go away with you feathers all ruffled. And your right, we should stop hacking at each other and get back to the question originally posed. Let er Rip......
I'm supportive of the OP's keeping her mother at home, since that seems to be going well for her, too. And I am also a former caregiver who kept my mother at home, which is why I am now broke and alone and, since my mother's death, feeling existentially redundant.
But the point being made by the Don't Do It Camp needs to be taken on board: the fact that it *can* be done doesn't make it a good idea, or not necessarily anyway; and what you tend to see on the forum more broadly are countless instances of people who have embarked on caregiving and got themselves into horrific trouble because they underestimated the sacrifices involved.
There are pros and cons in the home or nursing home debate and no one is going to know what's the better choice for an elderly lady they've never met. As it happens, I agree with you that this OP's relatives are bang out of order sticking their noses in with that snotty attitude they've got; but that's not the point. Please have a thought for the dozens, if not hundreds, of possible readers here who are sinking under a burden of care that they really can't manage but feel obliged to continue to carry. Tell them to make more sacrifices and they will, but the outcome could be disastrous for all concerned.
But it also helps to have been a home caregiver if you're also a "Health Communications Consultant" and can incorporate your experience into your professional life.
This is your website, right? .healthcommunications/
You present an interesting perspective, but I think what full time caregivers go through on a daily basis is quite different from your situation. It might be interesting for you to take some time and read posts from the people who are at their wits' end from caregiving, whether for a demanding parent, one with dementia, one with mental issues, or one with massive physical issues.
Caregiver burnout seems to be frequent, something which those of us in the trenches understand.
But let's take a look at this differently. This was a successful and rewarding time for you, so perhaps you could share some insights on issues such as these. Help us see how you would handle these situations so we can learn from you.
1. You have siblings who won't help; you're spending nearly all your time caring for someone who is mired in dementia. You listen to the same comments and questions repeatedly. Your loved one won't accept home care, won't cooperate with you, becomes hostile and physically defensive. How would you handle this situation?
2. Your loved one has a hoarding, or at best a collection and retention policy. The house isn't safe, it isn't clean, the heat is set in the 80s during the summer. You have respiratory difficulties from the poor air in the house; that affects your stamina, but your loved one still needs to be transferred from wheelchair to bed to bathroom. You're overworked, overburdened, becoming ill and emotionally challenged. How would you handle that? How do you continue to have the stamina to deal with everything when your own health is deteriorating?
4. Funds between you and your loved one are tight; you can't afford to pay for respite care but you're drowning in responsibilities. What do you do?
5. Your loved one still believes that he or she can do what he/she did 40, 30, 20 or even 10 years ago. She wants to clean house weekly even though she is reliant on a walker and has had a few falls. He wants to mow the lawn, maintain a garden, drive a tractor to work in his garden, but he doesn't remember the difference between a tractor and a lawn mower. Yet he's determined he's going to do these tasks. How would you handle that?
6. Your loved one needs to use oxygen 24/7 but has decided he/she doesn't need it and goes around huffing and puffing. He/she has fallen more than a few times but won't use a cane, walker or rollator. He/she is adamant about not doing what medical professionals advise is necessary. How would you handle this situation?
I look forward to your answers Instead of reacting to other posts, help us understand how you would handle some of these difficult situations. I'm frequently in a quandary and end up frustrated and can always benefit from the experience of someone who can handle situations better than I.
But I am glad that it had worked successfully for you.
So to grumpyotter who posted the original question: My answer was apparently wrong. The correct answer is to accept that your aunt is right. Your mom would be so much better off if you put her into a nursing home. That way you can live your life and not have to make any sacrifices. Besides, caring for her at home just can't be done. It is impossible. If you try to do it you will ruin your life and it may even kill you. So please don't use me and what I did as a model. Apparently I am a fluke; either that or I don't have as much on my plate as the normal person does, or I somehow managed to pool more resources together than the average person has access to. Nobody else could ever do what I did. So you might as well give up and get your mom into a nursing home asap!
Additionally, your personal/career interests are in line with what you did for your mom. Not everyone shares those interests. I think we all have to respect the choices each of us makes. Plainly and simply, not everyone can do what you did for your mom, You're lucky to have the intelligence, education, and resources to do it. Not everyone else is as blessed and you need to recognize that fact.
Doug you never mentioned having a spouse or children... put those into the dynamics and it's a whole different ball game. Same different ball game if the grown child is a senior citizen him/herself with a variety of interesting health issues that can pop up out of no where. Where did that heart attack come from? I broke what? Yikes, cataracts, no wonder it's hard to drive at night?
You will note on the forums there is a lot of reality checks. And I am glad some of the writers are frank about what is going on in their lives.
All I am saying is that it CAN be done, and you don't have to be rich or retired to do it. Its a shame so many people on here are into personal attacks instead of offering support and advice. I answered this question because this person is caring for her mom at home, just like I did, and I wanted to support her efforts. I disagree that only 1% of people would be able to do this.
As for what I am doing now? I started a full time job in January and I make $25,000 a year (about half of what I made at the job i quit to be my mom's caregiver) and i get no benefits. But one of the lessons I learned from this us that money is not everything. I continue to lead a very simple life. In my spare time I do a lot of volunteer work. Twice a week I visit the Alzheimer's Care Unit at a local nursing home and I visit with the resident who never seem to have any family members visiting. I always bring my guitar and do sing a longs, and then I chat with the residents and just spend time with them. last week I brought along dice and a cup and me and three of the male residents spent about an hour shooting dice and laughing and having a good time. I also started a non-profit organization in honor of my mother and I have purchased my mom's house from her estate and on evenings, weekends and overnights I provide free respite care for those who are carting for someone at home. A caregiver can drop their loved one off at my house and I will stay with him or her and provide care if the caregiver needs a break, has an appointment, wants to run errands, go out to dinner, or for any other reason. I am also starting a "Share the Care" program in my county. I want to support people who are caring for a family member at home. We all need more support and resources. Just as you said that home care is not for everyone, nursing home care is not for everyone either. I respect and admire those who choose home care and I want to support them and encourage more people to do it.
lol
We probably ought to start a different discussion group about this topic - maybe later.
But continuing your theme, in an idle moment yesterday I found myself calculating how "Society" (that nebulous country populated by Average People) values my own various types of expertise and experience. And apparently, based on the relative pay scales that apply, my ability to compose grammatical sentences is more than 120 times more valuable than my ability to provide for the needs of young children and frail elders over sustained periods without giving in to the urge to knock them on the head and bury them in a flower bed.
And that's just the numbers talking. When you also factor in the reactions from other people you describe - the changes in facial expression when they engage you in conversation, the assumptions made about your awareness of world events and so on - Society is if anything even more insulting.
But I don't think the answer can simply be to pay somebody *else* to do that work; because if they are paid what the job is worth in societal terms they will often do it very badly, QED; but if they were - ho ho - paid what it's worth in terms of responsibility then every family in the land would be bankrupt. My conclusion is that we are living with a social model that is not fit for purpose.
And I've wound up so off topic it's ridiculous - apologies, Grumpyotter.
Back when I was 40 was I a gym rat, I could hike 20 miles on a weekend, climb ladders with a single bound, was faster than a speeding bullet.... then I hit 65, oh my gosh, what the heck happened. I was in my OWN age decline. If I had to do hands on care at my parent's house [who are in their mid-90's], who would lift ME if I should fall?
I still have a career and I cannot quit.... it wasn't until my parents got into their later years that I realized hey who is going to take care of me since I was never had children? I would need to hire a lot of people to do all those things.
Yes, keeping Mom and Dad at home might work for some people, but not for everyone. For my parents when the time comes that they need another layer or help [right now they are independent in a single family home except for driving] it probably would be Assisted Living otherwise my parents would barricade the door to let any professional come in to help.
On the brighter side, if she'd be in my care, she would certainly Be Dead By now. I would not have caught any of the 3 bouts of pneumonia she's had, nor the heart block. None of these came with any of the obvious symptoms, just a bit of lethargy. But the fact that there were trained nurses around to alert the doctor or APRN made a big difference.
At first there's a relief from the routine, the getting up early to clear the walks of snow in the winter, plodding through bad roads to get to work...same thing over and over throughout cold weather.
There's also a relief from the office politics. No more backstabbing!
Then gradually the relief changes to a kind of nostalgia for the interaction of work, the stimulation of problem solving, the pleasure and rewards of positive work performed (in my case) for clients, the gratitude for a job well done (sometimes rewarded by a nice raise and bonus at the end of the year).
That then segues into a more intense loss of intellectual stimulation and interaction. Sure, I can read stimulating books and get out my old college texts to challenge my mind, but it's not the same as applied stimulation in a problem solving work environment.
Then there's the sense and monotony of being drawn into a regimen of driving, same old routes because there just aren't better ways to get from point a to points b and c, same old traffic patterns (distracted and tailgating drivers, people who run red lights and nearly smash your car), sitting in doctor's waiting rooms, sitting in ER rooms....these substitute for interaction with co-workers.
Instead of providing services, you're on the receiving end, and it's easy to distinguish the manner in which you're now treated. You're a customer, a client, and there's a sense of mentally being kept at bay because you're not an employee at the places you're visiting.
That's when it really sets in that you're no longer in the working world but in a world that's somewhat between two realities, a kind of no-person's limbo. And that's when you really miss working, just being able to interact with people and not worrying about someone's medical issues.
I don't disagree that elders should be care for at home if possible, but in this country the system is not set up to help families achieve this. So what is your deal? You still retired and full time caregiving? What are you and Mom living on? You have a large trust fund?
I needed to think what it was about her tone that got right up my nose. And I think it's the combination of patronising and superior, coming from someone who is not constantly in the company of your mother but is nevertheless entirely confident that she understands her needs better, that did it.
I'm delighted that their friend did so well in a nursing home. Good for her.
I'm sure that your mother does tell her that she doesn't do much, and that your aunt perceives this as a problem.
But it's not as though you haven't considered the alternatives, is it. I assume your aunt is aware of the failed experiments?
So you're supposed to think "my, this place sounds wonderful! How marvellous it would be for mother's quality of life! Never mind mother's known personal preferences, resistance to regimentation, attachment to her familiar surroundings and all that - let's give it a whirl! Thanks auntie! You're a life saver."
Then there's the sly implication that you, Ms Dogsbody, have learned nothing about the spiritual, emotional and intellectual aspects of dementia care. Hey, as far as you're concerned as long as the old gal's clean, fed and watered everything is dandy, right? (No, didn't think so).
Sorry I'm just too cross to be helpful. ***Bloody*** woman. I'm not surprised she ruined your day, she's ruined my evening and she's not even my problem. I'll come back when I've calmed down a bit.
It has nothing to do with guilt. I was simply stating some facts and sharing my personal experience to support the person who posted this question. She wanted advice on how to stop the passive-aggressive pressures to put her mom in a nursing home. I gave her several reasons why caring for her mom is better than institutionalized care.
I was only 40 (not retired) when I quit my job and it was a sacrifice. I spent all of my savings and most of my retirement to be able to care for my mom at home. But it was a sacrifice I was willing to make. Sometimes you need to give up violin lessons for a while.
For another research project I compared home care rates, attitudes, and beliefs among different countries and cultures. Here in the USA we are very quick to put our parents in nursing homes. We could learn a lot about the health care system in other countries like Japan, where elders are treated with more reverence and respect and they are cared for by their families.
We should be supporting people who want to care for families members at home instead of trying to rationalize why institutional care for our elderly should be the preferred option.
And BTW, Doug, I love the idea of an accordion player at home. I'm going to check on that and see if there are any local groups that might do that. I might even make it a neighborhood event - have someone to entertain at the local beach, invite the neighbors, and have a neighborhood picnic party.
I also think having more programs such as the Alzheimers Assn. sponsored would help - other than forums and support groups, it's not as if caregivers have a lot of places to turn for help.
But I also think that someone with funds to be creative could create man caves in AL, IL and LTC facilities. They don't need to have a fully stocked workshop, maybe just a few projects here and there that woodworkers could sand, fit, or in some other ways putter around the shop. I was thinking of a finishing shop where woodworking trainees could come to share knowledge and stories with elders. The young ones could do the cutting and fitting, and bring the nearly finished projects for elders to help with.
Same with activities for women; There are ways of making quilts that could be managed by those with dementia, and are in some ways easier than beading and less boring than bingo.
I also firmly believe that adaptive gardening has a major role to play as well.
But wouldn't it be great if Lowes or Home Depot had a little satellite store with demonstrations on things men could do while in a care facility? Might be unrealistic, but think what a draw it would be.
I don't believe fall rates are higher in a NH than at home. Home care does not have mandated fall reporting like a facility does, so comparing the two is a red herring. Home based falls could be the same or greater - nobody can know at this point. I can say that the staff where my mom is are trained on fall prevention, and they do a lot of preventive measures to avoid fall situations.
A lot of nice facilities take Medicaid and you aren't forced to move. It has no bearing whatsoever on the care standard for the patient. It's up to the person looking into whatever senior residence is needed to make sure they will take Medicaid when the time comes. It's part of due diligence before signing up.
Assisted living will not keep someone in the advanced stages of dementia, or if the person requires 24/7 supervision and skilled nursing, because that's not assisted living. Assisted living isn't the same as a dementia care/memory care facility. To place your loved one in the right kind of facility to start with, it's important to understand what each kind will & won't do. Make sure the facility can handle advancing needs, or yes, there will be a move required into somewhere else. Care occurs on a continuum, and not every place is a nursing home. You have to do your homework in advance.
It sounds like you had a pretty ideal setup, and that's great. You were lucky and very fortunate. That will not be true for everyone who comes here looking for help and options.
Nobody offered to take over my bills when my mom got to be unsafe on her own. Nobody offered to contribute to my retirement account so I could stop working. Nobody offered to pay for my health & dental benefits, car insurance, gas, food, piano & violin lessons or orthodontist for my kids either. Not everybody in caregiving is retired and can uproot to move in with their aging parent for 10, 15, or more years depending on what kind of dementia is involved.
Some of us have had parents with dementia and very wild, violent behaviors that I would have never been able to control in my own home simply due to my lack of size & strength. I wouldn't dream of putting my family in that kind of risk for harm. Nor would I expect my teenagers & family to give up our home to convert it to full time dementia care. That would be disastrously unfair to them. Home is our sanctuary away from the world.
Saying one choice is better than another is very narrow in perspective. Each family has to make this determination on their own based on their own situation, research, and visits to local facilities to understand the options.
I had the opposite problem. I put my mom into residential care due to her extreme behavioral problems. Her side of the family just could not come to grips with it despite the fact that 2/3 of them never lifted a finger to help her stay. The other 1/3 that tried to help her became to frail and ill, and has died recently.
My mom didn't want to go into a facility ever. She swore (quite loudly) that she was never going to leave her home other than in a pine box. Well, things didn't work out that way. I was not in a position to leave everything and move in with her, so I'm grateful there are other choices for us.
Mom is getting far better care than I could provide by myself. There is a trained staff there who can move her with a lift, bathe her, ensure she gets the right meds, and deal with anything around the clock. This is a huge anxiety reducer for me. The activities don't apply to her so much because she acts out in groups, and that's OK.
They have compromised on the strict schedule for her, as much as they can while still making sure she gets her meds as prescribed, with food. I can also say she listens better to them than she ever would for me, so it's a better dynamic in place than me trying to get her to comply with anything.
Yes, there was a period of adjustment. My friend the social worker said that it takes months for seniors to adjust. Add more time if they are farther into dementia. The adaptation period is not less than 4-6 months, but facilities have their ways of dealing with it - buddies, volunteers, making sure the person is included. You have to be patient and trust the process.
Some people can do home care the entire time and are blessed by doing it. I won't judge anyone's choices as long as the senior being taken care of isn't left to passively watch tv, fight with carers, and everyone concerned is under too much stress and in crisis.