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

Thank yoi for your comments...sandwich42. I hope i did not just have your post reported...i hit the wrong button seeking to reply to you. Sorry. It feels great to hear all your comments as it is very stressful. We lost our 27 year old only Son 3 years ago and run our own business and do d*mn good job with all the adversity placed at our feet as well as the caretaker sister. And yes i will post the judges reponse. We have hired a family law attorney yesterday and will no more today. It seems to me that having a will in your younger years and stating your wishes at that time should still stand during and not be able to be manipulated during health issues as this is the my husbands Mothers wishes. Ugggg....we have tried to be diplomatic and accommodating to visitation and avoid having to keep them permanently void of communicating....BUT they could end up forcing their Mom into questioning her mental status and that is awful. She is very happy and we want to keep her that way. She wants for nothing. These sistera dont even ask what can they do help. So selfish. Thank you all for your advice...pretty spot on as to how we feel. If my husband and his sister didnt Love her so much they would pack her bags and put her on their doorstep...but that would be cruel and we dont want her to be a rag doll that is pulled back and forth. She walked in the snow to her nursing job raising 8 children...gave up personal things to give to her kids. She doesnt deserve this.

grumpyotter: You will be getting a lot of "takes" on what to do with your mother. I did= "just trick her," "move her without her knowledge," and the like, none of which I did.. While my mother was in the hospital and I had to pack up and move in with her, I heard from a cousin I hadn't heard from in 45 years! That I DID NOT NEED!

I envy you that you are able to care for your Mom at home the way you do! I wish I could live with my Mom and take care of her, may God Bless you! People with Dementia want the familiar, and you are her familiar. You know in your heart what is best, how much you can handle and I think it is wonderful that you want to take care of your Mom in this way. Hugs to you, ignore the haters.

sandwich42......that was great. Made me laugh about the plane to Cancun and the bigger dog snipping. I needed that. And you are exactly right about letting them do it for 24/7. Before my sister passed 2 years ago, she would "help" me out for a day when she could fit it in. When I would get back she was MORE than ready to get back to her life.....forget mine. Again, thanks for the smile and laugh.

Judebee57 - I say let the sisters go to court and hear it from the judge that they need to cease harassing the caretaking sister and your husband, and the existing POA stands - too bad so sad, now pay the legal fees. They might not agree with the legal decisions already made, but that's too darn bad.

Caregiving sister & your husband might need to have an attorney write up a real cease & desist letter warning the others of what can happen in court if they do not stop the harassment. Both sister & husband need to keep a communication log of every single thing coming & going from that group.

OR

Invite the other sisters over to mom's house, and leave them there. Caregiving sister has a bag packed and plane reservations to Cancun. Good luck y'all! Have a blessed time with mom! Can't wait to see how you straighten it all out.

I hope your husband is verbally standing up for himself and the caregiving sister. Sometimes these yappy dogs will shush when a bigger dog snips at them.

Hello...husbands sister has been caring for their Mom for 7 years. She sees to her daily needs ie medical, social, all of it. She is a retired nurse. Problem is she is going into early dimentia within the past few years. There 8 siblings...3 are nurses and have decided in the past 1&1/2 to decide they want to make decisions for her based on their nursing skills. They have not been apart of her life since 2004. They have called Elder Abuse to only be told there isnt anything there. My husband is Power of Attorney and they are 3 have recently sent a letter to my husband demanding he relinguish his powe of attorney to the one local sister. It is dispicable the stress they are placing their Mom as she has stated she will not go anywhere without her care taker daughter and these 3 sisters dont like their care taker sister...but yet the continue to push that they dont want her removed from the sisters home but expect their Mom to be pushed about as they see fit for their time frames. No regard to the care taker sisters life with her 2 adopted daughters...14 and 16. They have always been jealous of these adopted children. They are now wanting to take my Husband to probate court if he doesnt give his appointed Power of Attorney to the local sister. He refuses as he is only appointed for her health and his Mom set this up years ago. She has stated she does not feel comfortable in their prescence as they askmher questions and it makes her feel stupid. It is a complicated situation...and no appeasing these 3 sisters. They are in my opinion Educated Idiots who are creating their Mother great mental duress at the age of 84. We feel she should be able to decide whom she sees and when. The one sister at one time said she would spit on her grave amd when she chose to move from Texas to her daughter in Illinois the local sister chastised my husband for buying the boxes to help her move. It is dispicable.

Boy, really great conversation and good posts/points from everyone. Everyone and every situation is so different. Everyone has different retirement, savings, VA benefits, or even be destitute but one thing we as caregivers have in common is we are doing the best we can and are making our decisions based on what our situations are. When people use to suggest something to me I would go into a long "well, we can't do it that way because" story. Now, I just say thanks for the input. I do know that living with my dad for 6 mos while he recovered from his heart surgery, having an estate sale, selling their house of 40 years, and finding a retirement place he liked almost did me in and he was in his right mind and so compliant. But it was a 24/7 job with no help. a month into it I HAD to put my mom into a alz/dem. facility. It threw her completely out of wack, her routine if you will, with me living there. My dad did everything for her and one minute she would say of course she knew he had had surgery and couldn't get out of bed, 5 minutes later I found her hounding him to get up and take her to eat then she became so mad that she went to shoving and hitting. Ooops, got off track there. Anyway, in their case (and mine) she needed people that knew how to handle difficult people (which she never was in her whole life until the evil disease hit our family) and I wasn't the one to do it plus the fact I had to get my 87 year old father back up and healthy. Like I said before, each situation is different. We were lucky, no blessed in the fact that they had good income and my mom had had the foresight to buy long term care insurance. My dad use to tell her all the time that wasn't necessary and she would never need it. He is singing a different song now that it has been 6 years and he has needed every penny with her care being 6 grand a month. My mom went through so much with her mom and she saw what all it took. So many people don't have the blessings that my dad does. Don't get me wrong, he's NOT rich by any means but with my mom's insurance, social security, VA benefits, it's doable for now. Someday we might have to look at medicaid. We will cross that bridge when we get there if we do. I know that I wanted the best for my in laws, and now my mom and dad. I thought I could handle it and did for 6 mos. but it took a lot away from my family and health. I still have a lot of drs. appts. with dad and of course check on mom to make sure she is being well taken care of. They live in different facilities in different cities but it's not that bad. I think I must be starting to ramble here so with all of the above being said, I think some people can handle having their loved ones live with them, some can't. Those that try it for a while and can't do it anymore should not feel guilt one bit. Guilt implies that you have done something wrong on purpose. That really helped me understand not to feel guilt that I couldn't handle my mom anymore and put her somewhere she would be better taken care of than I could do. I'm not a nurse nor do I know what alz/dem. caregivers know. I have learned a lot in 10 years but I couldn't do it 24/7. I/m in awe of those that can. But at the same time, be careful of your own health and lives. When you get worn out and down, depression is a sink hole. Hard to get out of even when it's all over. Well, did it again.....went on too long.....One more thing.....people of a certain age are going to balk at the word nursing home. If they grew up in the depression or after they were awful and that's what they are thinking of. My inlaws were shocked that they had gotten so nice from what they remembered their grandparents had been in. Food is better, nicer surroundings. Yes, some are good, great and some are bad. You have to stay on top of all of them. But just a heads up that that is why a lot of them balk at the idea of a nursing home. Ok, that's it for me. Sorry I went on so long or didn't make sense. Good Luck and God Bless....

Elder care is pretty much the same worldwide when it comes to family.

My best friend was born and raised in India, now lives here in the States with her husband.... and she has the very same issues with her in-laws [83 & 91], who live in the old country... there are other grown children who are also living in the States. The in-laws are stubborn, they won't listen to their children in regard to care. If one of the in-laws doesn't feel good it is high drama.... someone is always on a plane back to India... the father wants to move to a retirement facility, the mother doesn't. The in-laws keep firing really good helpers, etc. Dad likes the adult day care, but the mother doesn't so she refuses to go, yet complains she is so bored. Half the children want the parents to move into senior housing because it is too much for the Mom to deal with the large house. Sounds familiar???

As someone who took care of my dad for years (89 and dementia), I have recently decided to move him into a nursing facility. Neither I nor the daytime caregiver that I have while I work can manage him physically on our own any more, and the dementia has gotten worse. It is the best thing for him AND me at this point -- both mentally and physically.

As I have informed each family member of my decision (I am single) they have been very supportive... saying things like I'm surprised you were able to do it this long, and it's the right thing to do. It's close to my home and we will still be there regularly -- it's not like you drop them off and ride away into the sunset. There are still many things to manage.

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.

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.

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

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.

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

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.

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!

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!

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.

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.

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.

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 - 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.

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.

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.

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.

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

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.

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.

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.

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.