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My mom fell last summer and needed 24/7 care. She has been from hospital to rehab, and now in a care home and is much stronger physically now, but has been very angry/frustrated with me on a daily basis the last few months because she wants to come home. She is also very demanding and difficult. If I had help, I fear her behavior would scare them, but at the same time, I wonder if her behavior would improve after being back home? I'm still trying to work, am an only child, no children, and separated from my spouse. I question the big decisions I've had to make and wonder if I'd regret not trying to bring her home. One of the biggest surprises I have is even though she is in a care home, how much time, energy, stress, and sadness I still feel--which is why I'm torn and not sure what to do. How do you know which path to take? Thank you

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I'm afraid I got sidelined the last week or so with a virus--think I got from my mom who was sick earlier. The short story is I kept trying to keep up with everything and ended up getting dehydrated and had to visit the ER for fluids overnight a few days ago--feel better but not 100% yet. I know in my head I have to take care of myself, but somehow it doesn't always work out that way. I managed to reschedule the mother's appointments, my appointments, work, etc so I could be off for 2 days--first time that I did not see my mom for more than a day. I returned back to visiting, and the bad behavior did not miss a beat! The lessons learned (besides taking care of myself) are that I can't be the main caretaker for her and I would have to get 24 hours outside help if she ever came home. Thanks again for everyone's feedback, I know it is hard for everyone as well and it's comforting to know we all are able to support each other.
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paulahelen2 - I agree that we are so blessed with our husbands support and help. I truly couldn't do it without him without having to quit my job. God Bless You!
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That is such a hard position to be in. My mother was in a rehab center and complained about the care, food, etc., all the time. She was so angry most of the time and a pia basically. I brought her home and her whole attitude changed. She is now so grateful to having us take care of her. She says she knows she is loved and thanks us all the time for taking the responsibility for her. I work and my husband takes care of my mother. I can't even imagine trying to work as you are and having the full time responsibility for your mom. My heart believes that you are doing what is best for your mother with your current situation as being seperated from your spouse and working. Does your mother need care 24 hours a day or can she function with minimal care?
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I have a question. I read the response from Beckytodd1 about being some kind of representative. If your loved one has dementia and is no longer able to sign, but you already are the health care advocate and durable power of attorney, how do you go about becoming some kind of representative. Is that even possible?
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Paula: For some, this is not an option due to the adult child living in another state for one, etc.
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My mother was in a nursing home for ten weeks. She was very unhappy. I brought her home and she's been home for 2 1/2 years. Very happy at home. I take much better care of her than they did in the nursing home. They just kept medicating her to keep her quiet. Food was terrible. She went weeks without a shower. Lost 10 lbs in a month. No comparison to being home.
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The real point is to let them stay at the NH or AL. Why bring them home where they'll age even further and are then less likely to take care of themselves?
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Ovoilette....Sounds like my story! You are blessed to have your husbands help and support. My husband is a huge help to me with my mother. I couldn't do it without him! God Bless!
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My mother was able to live with me for the last six years of her life. She died in her own bed in her sleep at age 104. The last two years were hell.She was demented (I believe as the result of recurring UTIs). I too am an only child. My children were no help at all. I hired someone, using the funding of Mother's VA Aid and Assistance pension from my father. I don't regret keeping her home. My conscience is completely clear and I don't have to give her home up to pay a big Medicare bill. My work in caring for her during her final years gave me peace of mind about the situation and also gave me a small inheritance - my mother's home.
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Hi! My mother is 90 years old and has dementia. She was getting very weak and not able to stand up by herself. Because of that we thought that putting her in a facility to do intensive rehabilitation to help her get stronger was the answer. She went to the hospital and stayed the required 3 days for medicare and then was transferred to this center. I, too, was feeling bad, quilty and just downright awful because she was there even though I went to see her every day for a few hours after I got off work and on Friday, Saturday and Sunday I spent about 10 hours with her but it hurt to leave her when she would cry and be upset when I did. Every day she would call me at work numerous times a day and call my husband or my sister crying and saying such horrible things to us, like "how could I do this to her", "you told daddy before he died that you would take care of me", "I would rather be dead than in here", etc., etc., etc. Finally after 3 weeks of that, I couldn't take it anymore and told them that I would bring her home and asked for her to be released. She came home and is now the sweetest, loving mother a person could ask for. She is very appreciative that she is home and we are taking care of her again. She says thank you for everything you have done and are doing for me numerous times a day. My husband takes her to rehab therapy a couple of times a week and it is not really working much. Today he told me again that they wanted to admit her again to the facility so she could get therapy 7 days a week again. He told them that we weren't going to do that again so they are arranging for someone to come to the house and do therapy there every day and are also arranging for someone to come and help out because my husband cares for her Monday thru Thursday for about 10 hours a day when I am at work (I am so blessed)! I will pray for you to make the correct decision for your situation. Just wanted to let you know about mine. God bless!!
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No matter how much she 'wants to go home', sometimes at the beginning of end of life, the patient has to accept her former life is over. No friends are going to stop by, there will be no bingo nights at the church, no one is going to take her out to eat, to shop, to the movies. Friends and relatives move 'down south', die, retire, have their OWN stuff to deal with, and so everything is heaped on one poor remaining daughter. Who gives up her life to basically run a puppet show, with mom as the headliner puppet. Yes, I'm sure she wants to 'go home' and it is extremely sad, but you have to do what is best for mom AND for you. After all, with all the grumbling, what is mom going to do, give you the silent treatment? Cut you out of her will? Her former life at home is done. If she has money and can afford lots of help, that's one thing, though it doesn't sound like it. ..... Realize she is going to go downhill quickly, will never 'recover' to any extent, will get much worse, and then you'll have to look for a nursing home.
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Appreciate all your great comments and advice. My mom is just shy of 94, alert, and no major illnesses, but did get diagnosed with mild cognitive issues. She is in a 6 person residential care home which was the best option for her after she finished her rehab at a nursing home since she was then considered a high fall risk. Assisted living is not the best for her as she still needs help with dressing, meal prep, and bathing and someone needs to be there to make sure she doesn't bolt and fall. I have all the required med documents for her and enrolled her for a few days in a adult day program which has been a lifesaver. I have pretty much isolated her daily bad behavior to me as I check in frequently on how she is doing with everyone else. I've had the care home staff tell me she doesn't act up as much when I'm not around. Early on she was evaluated by a social worker through the home medical team and at that point she did not recommend moving her home--at the time she was not screaming to go home--the really bad behavior started a few months ago, so it would be a good idea to have someone else evaluate her. Thanks again all.
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Is your mother able to make herself coffee, toast, heat up some soup, wash or fold laundry? She may be feeling like she is under-functioning in the care home. I agree you should find the type of assisted living that suits her best. Maybe you could let her stay over on weekends so she can do some of these things she doesn't get to do in the home where she stays. Yes, she will try to guilt you, but she may also come to like this arrangement with fewer complaints. If you are stressed out now, bringing her home to live will double your stress.
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Daisymay, You are separated from your spouse? Did you have hopes of getting back? That may not happen if you bring your Mom home. Sorry this is such a hard time for you.
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Very good answers. Sometimes it helps to think of them as your children and not your parents. Remember all of the times you did what was best for your kids- not what they wanted- as they were too young to make wise choices. Parents with dementia cannot make rational decisions and will not develop this as they get older.
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Hi Daisymay1,
I too am the sole caregiver for my mom (age 92) and still work full time myself. I'm planning to retire December 2016 or March 2017. There are many days when I'm glad to go to work as this is my "respite" time. I stay in touch via phone. My mom's health was pretty normal (for a 90 year old) up until about 2 years ago when she fell and broke her hip. It's been a steady decline since that time. She has health issues, some which conflict with each other. By that I mean the kidney specialist wants to reduce her medication, but her PCP and cardiologist want to keep them at a higher dose, as she holds so much water she can barely walk. It hurts me to see mom like this. I am keeping my mom in my home for as long as I can. I had to put my dad in a state hospital years ago and he was cared for by the state, or should I say, NOT cared for. He lasted a few months there, maybe a year at best. I'm not doing that to my mother. Like you, I have no time for myself and am exhausted most of the time. I feel depressed sometimes and suffer guilt, but this is my life for now. I plan to start attending a support group once in awhile to try and learn how to deal with it all. My mother suffers from memory loss but the doctor doesn't feel it's really dementia because after she does something like misplace something or hide it, she does remember that she did it and can discuss it. She seems rationale most of the time but has great difficulty making decisions, wants my advice constantly and leans on me for support much of the time. It's hard to see someone who once was my "rock" now be the one who needs constant support. I think we'll all get through it but is extremely difficult being the sole caregiver. My sister hasn't even phoned my mother since January! So, find strength and know love will guide you!
Judy
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My mother, age 83, has dementia and was hospitalized for almost 2 weeks and then moved to a nice (high-priced) assisted living residence we had selected. She made friends and was doing well, taking her medications and very compliant. Every day she asked to go home. After spending a month there, we decided to let her return home with my dad, and she agreed to take all medications. It was also just a matter of months before their life savings would be depleted. For two weeks, she was wonderful; then the dementia got the better of her and she ceased all meds. It has been two months since her return home and we are back to square one. She is delusional, angry, belligerent, and projects most of this onto my 85 year old dad. We regret bringing her home and are looking for the next opportunity to present itself to send her back.
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Lots of great answers here, which is what I like about this site! I'm currently going in the other direction. After my Mom's broken hip, and rehab in various facilities, my Mom moved back home. Medicare paid for several nurses and therapy people to come to her home for a month or so, and I hired a homecare person to help with housecleaning, bathing, and other tasks. As the months went by, it became clear to my Mom that it really wasn't working. The responsibility of continuing to maintain a house and yard, the limitations of living on one floor in a two-story home, the degree she depended on me for support, loneliness, trying to eat nutritious meals, just trying to remember to do various things -- all became apparent to her. I'd held my tongue on assisted-living, not wanting to push it on her (whenever I push anything, she pushes back!), and pretty much let her arrive at the decision on her own (certainly, I've brought up the topic a few times in conversation). She decided this about a month ago, and there's been no change of heart, although certainly there are anxieties about moving to a new place after all these years at home. Our move-in date is in about 10 days. I'm hoping that she'll really enjoy it there, simply having people around to socialize with when she wants, knowing she's not a burden on her children, and simply living an easier way of life free from many of the usual responsibilities and tasks. My Mom is 91, has some dementia, but still can think pretty clearly much of the time. She also made plans years ago, saving for years to support her elder needs, and paying into a long-term care insurance for the past 20 years. I'm lucky in that respect. The past several months have been difficult for me and my family. I'm not young anymore myself! Trying to keep a parent afloat in their own home seems noble and what the parent "wants", but it's just not sustainable for a child who has to shoulder the task alone. (Note: lots of good comments on this site about "how to convince parent to go into assisted living." Well worth the time to read,)
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Daisymay1, I'm adding to my recent reply that I took Dad home after weeks of him hating it in the AL . He liked the place and people, but wanted to be in his own home and neighborhood where friends could easily stop by and visit. It was the more difficult decision for me because I live 1500 miles away. Though Dad was mentally sane (though demanding and cross at times), at 90 he could hardly walk(he used a walker), and needed someone to cook, do errands etc. He did ok at night once in bed (had a portable toilet near the bed and could get in and out on his own). I got him financial assistance through VA to pay for 8 hours during the day, but he couldn't afford anyone for the evening. This went on for 2 and a half years: Home Instead and friends and the (very occasional cousin) visiting/checking in, but no one at night. I visited 4 - 6 times a year. We talked on the phone every single night. Really difficult and I felt sad, guilt, stress but also love, compassion, and acceptance for my Dad and ultimately for me in the end. With it all on my/your shoulders, it's really challenging . But you will get through this. Just remember, though you love and care for your parent, you must also love and care for your own life which is AS important as theirs. Don't sacrifice your financial or social future because you too, have a life to live .
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Daisymay1, I'm an only child too, and experienced similar things with my Dad. I heartily empathize with your situation. I came to accept that no matter what I did, I would feel guilt and stress. It is not an easy situation, especially for single children like you and me because we have no siblings to share the emotional burden. You must find ways to center yourself during this time, and to care for yourself. Then you are able to make the best decisions possible, given the circumstances. Your mother will be demanding, probably no matter what. She is scared and (if I am presuming correctly), elderly? and at the latter stages of her life. My Dad did the same thing for months until he finally began to accept that he did not have the control over his circumstance and faculties that he once did when he was younger. Educate yourself on all the resources available to you for your Mom's care. If you decide to take her home, and she has the resources, then hire an agency like Home Instead or similar to come in a few hours a day to help out. They are professionally trained to handle "difficult" folks. Or, if she needs to be in AL, check out several places...and then make a decision. Just do your best. It will never be perfect and you might never feel totally good about it all. But, if you are doing it out of love, then all will work out eventually for the best in the end. Help will come to you in the most unexpected ways.
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Yes have her evaluated. But first apply for Long term Care throught Dept Children and Families. Have her sign paper for you to be DCF authorized represenative. And note to all , a POA can be disallowed General /Durable/ Health care Proxy all a nursing home I know of is really run by the nurses with NP writing orders nurses tell them to.
Mine was hi by car day preop admit day for gall bladder sx and had colon ca.
This nursing home nurses.Disallowed all proxies.
But they had taken on a nurse ( I never told them) and an Advocate advocating since I was 14 . Who has changed shaped several made laws.
They can not mess with DCF authorized Represenative that is horse of different color. And have listed on poa and HCS you are mental health poa and along with DCF appointed represenative , appointed Advocate, and appointed ADA American Disabilities Act Advocate. This allows you to advocate for her real needs . Not allowing a nursing home to chemically restrain someone in their wheel chair and or bed just because they dont want to be there.
Even a nonprofit which this was ( and I as agency nurse worked there) They aren't really.
When she cant relate what she wants you are her voice.
With ADA Advocates and stretegic media activity at same time ADA investigator came. I found out they had took the bait and considered him his own person.since I was DCF authorized and put in Proxy as present at Care plan meetings and In charge of care plan and know his wants and wishes.
I HAD APPLIED FOR LONGTERM CARE AND Home Based Health Care Long Term Care HBHC. Through DCF and Elder Affairs.
Do not attempt to take your mother home until you apply for this .Do online at Dept Children and Families go on like appling for food stamps. Look for Nursing Home care and the other will just be initials next selection below.
The home based health care will give a case mgr and meals on wheels adult day care they do lots of things activities movies etc brkfst and lunch. and health care aud , companion care about 16 hrs week adult day care usually 4 hrs day. There is senior care transportation. Diapers supplies etc .... If you take your mother home this will be of great benefit to help you . Also qualifies for respite care just you need a break or can use for extra days if need xtra help. Try assisted living if still not sure see how she does with that.
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MY mother went into a nursing home for rehab for just a week. She had fallen and has dementia. When it was time for her to come home, we had a meeting. I'm one of eight children. A couple of my siblings thought she should stay. They said she is only going to get worse. I am her health care proxy and power of attorney. I against my better judgement said I would try it. My mother hated it in there. Every day she packed up all her belongings to go home. She kept trying to get out the door of the nursing home. They moved her upstairs where the people were a little worse off than her. It was a nightmare. She cried to me all the time. How could I do this to her. My heart was broken. I brought her home after 10 weeks against the wishes of my siblings. She is happy at home. She needs 24/7 care. Most of my siblings help. We take turns staying overnight. I stay with her every weekend with my husband. We have help Monday thru Thursday during the day while we work. Sometimes my mother tells them to go home. It's not easy. I spend 60 hours a week there. I would rather sit at her house than sit in the nursing home. IF you are by yourself, I don't know if you could do it. You may have that same stress and sadness if she's home. Not an easy decision. My mother has been home for 2 1/2 years now. I don't regret bringing her home but I have no time to myself. I look forward to going to work on Mondays. God Bless you in your decision. There is no easy answer.
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I agree about the assisted living thing. Give that a try. My father started out there, and his needs changed and now needs skilled care. If she has a sound mind and can get around a little than that would be good for her. If she is in a nursing home she may feel out of place around othe people that need full time care.
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Daisy; when you say a "care home" do you mean like a family residence run priviately, or is it a nursing home? Would she be more appropriate for an assisted Living facility?

You need to get an accurate assessment (not your mom's opinion) about what level of care she needs. You can ask for an assessment from your local Area Agency on Aging, if you are in the US. You can ask her doctor to arrange for her to meet with Ot and PT and a SW.
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Thank you for your information.
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She needs an evaluation by avgeriatric psychiatrist to address her agitation. Start there.
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