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!

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Doug Seubert - I have to take issue with some of your blanket statements and what comes across as a guilt trip. Home care is not always the best kind of care. It's great you could do that for your mom, but there are so many ways that won't be true for others.

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.
Helpful Answer (12)

I had been a lurker to this forum for a long time before I ever posted. When I first came on here I used to be offended by how quickly it 'seemed' that folks were too ready to place a parent in a facility. I just couldn't imagine.

And then.....the reality of things swooped down on me quick, fast and in a hurry!

I shared on a thread about coconut oil and other things my mom is taking which is indeed helping. But still the level of dependency on emotionally and otherwise was becoming too much, particularly since my dad now is starting to really decline. Against her wishes, I started in home this week. My husband and I need a break and need the help and I made up a big lie and she believes for now anyway. Still too sharp and crafty so I have to have my ducks in a row.

I think it's great when anyone can devote that kind of time and care for a parent. If you have the emotional, physical and financial resources to make it happen go for it. It didn't seem the aunt was trying to be butt about it but I can understand getting annoyed to I suppose.

Now that I'm really into this, I learned a few things and appreciate now those comments that seemed so offensive at first. I KNOW I can't do it. My stress level was too high and patience level too low and I'm not under the same roof with them. I can only imagine if we were under the roof, yikes! I can't say it won't ever happen but I'm trying to do what I can to ensure it doesn't. Does that sound mean, I hope not? Just a clear reality check I had to come to terms with.

When I went to bed one night the left side of my face felt so tight I was sure I was maybe having a stroke. I'm only 51 and in reasonably good shape still. It didn't happen and it will be a cage match with my parents, but I got busy the next day moving ahead to get some help or else I may very well be in that 30-40% statistic of a caregiver dying while they're still here looking for help.

Each situation is different as many have said, but I'm glad I swallowed my pride and paid attention to those I didn't and sometimes don't always agree with. That's what makes the marketplace of ideas so great in this country and around the world!
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Doug you are doing some wonderful things in your mom's memory. At the same time, I think you're missing the forest for the trees. I would guess a majority of the caregivers on here are much older than you are. I googled your website and would guess from your pictures you're a young man in his 40s. You still have time to rebuild your portfolio and life. I'm 64. I don't have time to lose half of my 401K and start over again at half of my previous income. I have no children, so I'm it as far as my financial support goes. Others are still supporting children and spouses.

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.
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Doug, I'm sorry your feelings have been hurt, and I'm sorry that forum members seem to have ended up at cross purposes.

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.
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Grumpyotter, should find yourself dealing with second guessing from relatives and friends, it sometimes helps to thank them for their concern, tell them that you’ve got this and then transition the conversation to something else. If they don’t approve of what you’re doing, no explanation you can give will sway them.

Dougseubert, while we like to think that with a loving attitude all things are possible, reality is this isn’t always the case. The older I get, the more I realize a couple of things. What we think we’d do in a hypothetical situation (or someone’s else’s situation) is often not what we actually do when we are there. So I find it’s best to acknowledge that I don’t understand what they’re dealing with and not be presumptuous about telling them what I think is best.

That being said, you’re very fortunate that your choices worked for your family. But your choice would not have worked for my family or many others. It isn’t because we weren’t “willing” – it simply wasn’t possible. I have a spouse, kids, job, inlaws and at 35, when my parents first started their “time of need”, it wasn’t possible to move in with my parents. We did move my mom in with my sister and I for over 15 years (split time in each house) and it sort of worked till it didn’t. And yes, there were sacrifices not just for my sister and I, but our families as well. A few decades later, my kids are grown, I’m still working, my mom is still in her “time of need”, and so is my FIL and so is my husband. So again, it’s not possible for me to make my mother’s daily care my top priority. Oh, I tried to juggle and manage and one day, I found myself at the hospital, where both mothers were, trying to help my FIL and leaving my husband, who really needed me at home.

So think what you will, but my mom gets better care at the NH because they’re not battling over every doctor’s appointment, every test, use of a wheelchair and all the things my sister and I have had to deal with to get a totally non-compliant parent the medical care she needs. My focus has to be my husband and right now, helping my FIL as he approaches a transition in life. I respect your choice to do what you felt best for your family, so please respect that our choices for our families are just as valid.
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I want to thank all of you who provided helpful answers. This morning I had an epiphany. My aunt is having trouble accepting that her beloved older sister will never be better. I think she is grasping at straws in an attempt to deal with those concerns. I am going to keep that in mind as I craft my reply to her. Thanks for the support!
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I'm in a similar situation, so I can understand how irritating it is to get advice from people who probably mean well, but also have no idea what it costs for a facility placement or how devastating it can be to some people.

Now when someone suggests it, if it's someone who's just naïve, I explain the cost issue and watch their mouths gape open. If it's someone who's just nosy, I ask where they expect us to get the money, anywhere from $2K to $6K a month? Then their mouths also gape open.

In my situation, I would like to be relieved of the additional obligation of a second house, but I also know that my very independent and woodworker loving father would decline and go downhill so quickly that he wouldn't last a year. He even said he might consider a placement if it had a woodshop where he could putter around.

We've also seen family and friends go through the ravages of old age, some of whom also declined rapidly after going to long term or other care. Depression sets in; they're my opinion that's not the way I want either my father or myself to end our lives. And it is a personal choice we're entitled to make for ourselves.

I don't challenge, question or criticize anyone here for the choices they've made; the regular posters have demonstrated so much care and compassion that I know they've struggled to make the best decisions they can, and I support and respect that. It's unfortunate though that people in our lives or with whom we come in contact don't recognize these issues and feel free to opine on situations about which they know little.

Grumpy, the next time someone sends you a nicely worded e-mail, you might think about responding equally as nicely, stating that you're glad they support this idea and wonder how much they could contribute toward the monthly stipend, as you can't afford the funding. Then say something to the effect that you still need $xxxK dollars and look forward to their commitment to help with the finances.

Or just ask them how they expect it to be financed.

I've thought about this a lot and think that maybe the thought of taking care of an elder in their home is just so overwhelming, so challenging and/or so discomforting, that they project their own feelings onto someone else.

It's also a commitment that many people just don't want to undertake.

I say, to each his/her own, but don't tell me how to handle something of which you know nothing and have no experience.

(In fact one of the people who suggests this the most often can't even take care of herself or her pet.)
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Doug, yours is an extraordinary story. Are you suggesting everyone should quit their jobs at 40, spend their life savings, and devote their lives to caregiving? You must realize that is not realistic for 99 per cent of the population. You are either an exceptional person or a very rich one or both perhaps.

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?
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JB, yours is a great story to share. It sure can get to be overwhelming for many people. We shouldn't feel bad about getting help or placing loved ones in care. No two situations are the same. We have to look at not only what is best for our elderly but also what is best for us. The two needs are totally dovetailed.
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Doug, you said above "All I am saying is that it CAN be done". How?

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.
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