What do I say to relatives who insist my Mom should be in a nursing home?

freqflyer -- You're right! Let's just throw mom in the nursing home and forget about her then. I guess only I alone have the magical power to care for a parent at home. Silly me for making the sacrifices I did in order to be able to do this. And shame on me for expecting that anyone else could pull this off when it is so clear to you and several others that caring for a family member at home either isn't possible or it just isn't worth the work and sacrifice that it takes.

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!

Doug, apparently you don't want to listen to the other side of the coin where not everyone is able or is cut out to be a caregiver.

But I am glad that it had worked successfully for you.

And apparently you did not read the question that was originally posted. grumpyotter is cut out to be a caregiver and she says everything is going well. she is helping her mom remain living at home. she wanted advice about how to respond to other family members who think her mother would be better off in a nursing home. i gave my advice and shared my personal story and got jumped on and attacked. this isn't a very supportive forum. there are a lot of negative people on here.

Well, I'm just wondering how you had the patience to be a caregiver yet in just a few posts you're displaying hostility toward other posters. Patience in high doses is required for caregiving.

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.

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.

Doug, I will yield to you the Prince of sacrifice and kindness, and I say that with all snarkyness.

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 just re read my post and I'm very guilty of hacking at you. It serves no purpose and I will behave myself from here on. I really do think sharing your experience is valuable to the forum. But let's debate with respect to each other.

The durable medical equipment is covered under Medicare if it's ordered by a doctor, physical therapist, or hospice. I bought a transfer wheelchair for mom before I knew that. I have no idea if you can get the equipment ordered after the fact and turn in receipts for reimbursement. Thankfully, I waited on her PT assessment to get a walker, because all but $65 was covered, and that was mainly because she wanted it to be pink - custom paint job. Otherwise, the air mattress, hospital bed, leg braces, lift, chair, etc. have been covered. She did pay a copay on Oxygen.

Let me throw my opinion out there. I think as we are all individuals so then all care giving situations are individual. Maybe Doug you did have a smooth flowing time with care giving. If you did I'm happy for you. You are lucky. Unfortunately as others have already said in this forum that is not the norm. But I don't think anyone on here means to be unsupportive. This is just an emotional issue.

Doug, I love your ideas. I care for my mother in her home and it is very hard for me, since she is difficult. I wish others would develop the ideas you mentioned in this thread and we could really share responsibilities. Around here the support groups that I know about are through the churches. That takes away the honesty of the support, since everyone is counting the hardships as all joy. Yikes.

I wish you had come on here before you spent your money for things. Prescriptions have magic power of making things free for us, though Medicare does have to pay (but less than what we would pay). Information like that is something very good about a support group.

I do think in future years that fewer people will be aging at home. People are more used to moving around now and are not as frightened about living in senior communities. But so much will depend on finances. Many, maybe most, people will not be able to afford the more intense levels of care (AL and NH) without government assistance. I don't know if the country could handle all the people needing help.

I do think we need to develop some community-based help organizations for people who are aging in place, either out of preference or because of money. I like your ideas. Perhaps it is why things went well for you with caregiving. It lead to something that you needed to do and may be part of the answer of "what to do about Mom."

That being said, I still think your nuts to have quit your job to take 24/7 care of your mother. But it is what you wanted to do and it worked out for you.

Oh, BTW, things are different in the Orient now. The models for elder care are changing as women have become a major economic force (particularly in China). Senior facilities are being built. There is heavy investment in the market. So often when we talk of the Asian countries, we refer to what was going on last century. It is changing.

Grumpyotter is totally right to be annoyed with people who think that facility care is always best, even when home care is working out very well, AND those of us who used facility care can legitimately feel dissed by implications that we "abandoned" or failed our loved ones because home care was too difficult either, after we tried it a while, or given the situation we could already see we were in. Doug, to be fair, you and your mom had a lot of positive things going for you that many of us could only dream of.

We even took pains and bought a house all on one level before my hubby ever needed it, thinking that one or both of my parents would move in some day, and when Mother Teresa asked "Why are they not living with you?" it cut me to the heart, because it was my ideal too. But, slowly, over time, I began to see there were valid reasons, that even I could have explained to Mother Teresa, respectfully of course. First reason - mom refused to move and lived 15 hours away; second reason - being yelled at and criticized non-stop while trying to give care; third reason - mom threw out three different home care company people who came to interview with her, it was going to be her living at home by herself or nothing, and she was going to do that when she could walk again, nevermind her making limited to no progress in therapy towards doing that...and yelling at me again when I told her I was getting the house set up for her to be there using a wheelchair. I did not really begin to give up the dream until she started to get delirium every time she had any infection. I had to deal with what was, not what I wished it could be. Then I finally had the nerve to make the decisions that had to be made...which finally led to her moving here after all, getting in at least some good grandkid visits and trips in the vehicle we adapted for her, and my being with her when she passed on.

What I'm saying Doug is that I ENVY you. You had what I wanted and could not see a way clear to have for my parents. Just - Please don't hate me or judge me for not BEING you.

Vstefans, good analysis of the factors influencing decisions, and good point about not everyone having the opportunities or situations available to provide home care.

I fall, unashamedly, into the (probably minority) camp of those who feel that it is simply too much work and sacrifice to take care of an elderly parent at home. My parent is at home only because she can't afford assisted living and isn't impaired enough to be eligible for Medicaid and a nursing home. I am taking care of my mother at her home by necessity and not choice. If it were my choice, she would be in assisted living.

I would be quick to agree that staying at home is the best thing for the elderly parent, but I don't believe that their interests are the only one to be considered. In other words, I don't believe the quality of my mother's life is more important than the quality of my life. I also don't believe that taking care of my mother is the most important life goal I could have. I think it's important for adult children to have the freedom to say that their own lives, livelihoods, health, goals, families and friends are just as important or more important that making sure their parents' preferences are honored in their final years.

Carla, not only good points, but kudos to you for being honest about how you feel, as well as the financial situation governing your decision.

Carla - Medicaid qualification is based only on income & assets. Each state has their own maximum allowance, but here it's $3,000 cash/checking and a pretty generous property ownership amount. Other rules apply for certain kinds of relations who need to continue living in the person's home, especially if they are caregivers. I encourage you go talk to a social worker to get an application going. The worst thing that can happen is they say a certain amount has to be spent down before coverage would start. This extra amount can help out an awful lot even if it's for groceries.

It doesn't cost anything to work with a social worker/case worker to find out what your options are and how to make it work with what there is - regardless of where the care happens.

Sandwich - I don't know about most places, but in Florida, for the long term care benefits of Medicaid (as opposed to the medical care benefits), you have to be deemed nursing home eligible. That means you have to need help with a certain number of "activities of daily living" that include bathing, eating, etc. Very essential things. Once you're deemed to be impaired enough to be eligible for a nursing home, you have the choice of that or various nursing home diversion programs, including some assisted living, some home care programs like PACE (Program of All-Inclusive Care for the Elderly), depending on where you live in the state (PACE is only available in certain counties, and not the one my Mom lives in) and of course depending on waiting lists.

My mother needs help with a long list of IADL's (Instrumental Activities of Daily Living) such as cleaning, cooking, driving, bill paying, laundry, etc. These don't count for Medicaid long term care eligibility, though. I believe most LTC policies have similar qualifications, also. She doesn't have LTC insurance so it's moot in her case.

Wouldn't it be nice if the rules were consistent from state to state? Some states are strict, others aren't and everything in between.

My mom had LTC insurance, but cancelled it years ago because "I'm not ever going to need it." If we could use emojis on this site, I would use the one where the little guy is hitting his head on a brick wall.

Sandwich, more consolingly (I hope) - my late great aunt had top of the market LTC insurance, which her bank had sensibly advised her to take out years in advance; and then by the time it came to claiming, it barely made a dent in the monthly NH invoice. It just makes it a tiny bit less painful, I suppose; I dread to think what premiums you'd have to pay to guarantee full cover.

The important thing is, are you happy with the situation? And you are, obviously. For others to tell you you are not is wrong. I cared for my parents for almost 20 years. My dad passed away in 2006 and my mom is now in a nursing home because her care got to be 24/7 and I could no longer do it without sacrificing myself. You still have plenty of life left, Doug. Your mother is at the end of her life, and if her care gets to the point where your life is being sacrificed, then that is the time to put her in nursing home. Take care of yourself first, Doug. Then you will be a true blessing to others. I believe if my mother had taken care of herself first, she would not have deteriorated so badly. She was "waiting to die".
That was 4 years ago.

if this is what you have decided to do and believe it is the safest most nurturing environment for your mom,then do it. Don't allow others to step in and " fix things". You can block their emails or don't read them and or ignore them. You'll know when the time is right to move her into a care facility.

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!

JB, thanks for sharing your experiences on the journey from home care to more help, and for also expressing your appreciation for the exchange of ideas that takes place here. Just don't be a stranger to share again!

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.

Linda, excellent post about the difficulty of balancing multiple caregiving roles.

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.

You have to learn to ignore them You are doing what is right no-one else can do as well keep up the good work Ignore the so called experts they are not walking in your shoes Congratulations on your efforts.
Kevin

Me and my sister take care of our mom at home. Don't let them make you feel guilty. It's none of their business. As long as your mom and the Doctors and home health are satisfied that she is OK, then SHE IS OK!!! Just remember to take care of yourself too. If you crater, then she will be out in the cold. You know, we talk a lot about family in this country, but we don't deliver. We kick our kids out at 18 and turn our backs on family when they they become a burden. All talk, no action. I'd like to start a conversation in this country about family and caring for the vulnerable, really hold America to account for all the cheap talk about family. I think it would be interesting.

I would try to consider why your relatives continue to say that your mom should be placed in a facility. If they are worried that it's too much for you to provide this care, perhaps they want you to know that, so you can place her without guilt. If this is the case, kindly let them now that you are aware of the options and have chosen to keep her at home. Say it works well and you will speak up, if things change. I would try this and if they still continued, I would suspect they have another reason for bringing it up.

If they are suggesting she be placed because they believe she would get better care in a facility, which is what it sounds like to me, then I would ask them to specifically state their concerns. I might also provide them with some material on dementia so they can understand that a dementia patient is not prone to certain activities. Focus and interests in activities is severely impaired in dementia patients. Perhaps their expectations are too high for what your mom should be doing. If that's what their issue is, then they may have to just accept it. After providing them with adequate information, I would kindly request they stop bringing it up. I'd tell them it bothered me and I didn't need the constant distraction.

Of course, I take it that you are the Durable POA and Healthcare POA and the authority to make these decisions for your mom. If not, then I might take a different approach.

I don't think it's fair to have to justify taking care of your mom every time they visit or call.