Should we keep Mom in a nursing home or move her home?

16 answers | Last updated: Apr 09, 2014
Lisa McIsaac asked...
My mom has dementia. She is in a nursing home because at the end of a hospital stay it was determined that she had an acute CVA. We are also awaiting test results for a mass in her lung. Now we have to make a decision if she should stay at the nursing home or we should have home care. I don't know how to make that decision. What should we do?
 

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Caring.com User - Kay Paggi
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Trying to make the decision between nursing home care and in-home care can be agonizing. There are many factors to consider. One of the major factors is how much time See also:
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See all 853 questions about Alzheimer's and Other Dementias
and energy you have, and how long that will last. If an illness lasts several months and the patient either recovers or dies, either way, the illness is over. that is one thing. If the illness is projected to last for years and get progressively worse, that is entirely a different matter.

If the mass in your mother's lung leads to a terminal diagnosis with a limited life time, you may want to consider taking a leave of absence from your job and staying at home to provide care. Even then, there are more factors to consider. Do you have space in the home for a hospital bed on the first floor, can you meet both her physical needs and the emotional ones? Do you have energy to stay up nights and still function during the day? Is there extended family nearby that can provide respite for you? Since she has dementia, do you have the patience to answer the same question hundreds of times every day, to reassure her constantly?

For many caregivers, the honest answer to the questions above is no. When that is the case, as it is in most situations, the best solution is to let the nursing home provide for her physical and medical needs while you meet her emotional needs and improve the quality of her life.

 

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FrancesC answered...

I can say from first hand experience that having a family member with dementia at home is extremely stressful not only for the caregivers in the home but for any family members that live nearby and are involved with care.

My mom tried to keep my dad at home after he had a major seizure that caused a quick decline in his mental abilities. I did as much as I could, but after three years of dad's continually declining health both she and I were pretty much burned out, even with having additional help in the house (in-home care). Unfortunately it took an overnight visit in the ER and a mild heart attack for my mom to realize how burned out she really was. Mom often told me when she was younger "we kept our old people at home". I think this was a contribution source of her uneasiness about placing dad.

We placed dad in an assisted living facility about 6 months ago, which has really been a good decision. Mom is now able to get out of the house some without worrying about whose going to watch and care for dad as well as not having to physically do all the things he needs done for him every minute of the day. She visits him often (3-4 times a week) and he has other residents to talk to and interact with. At home there were no visitors; the neighbors didn't seem to understand dementia and how people with this problem interact (or don't, as the case may be).

Not that mom and I don't still worry about him and keep a close eye on his care, but the day to day chores (bathing, feeding, incontinence care) are no longer stressful for her or me. Daily incontinence care on a wheelchair bound person is stressful enough, add in the dementia aspect too and any medication management you may have to do and....

I can understand that on the one hand you want to have your mom near and be able to spend time with her, but keep in mind that the nursing home has skilled personnel that understand exactly what has to be done with every situation that arises. You'll still be able to go see your mom and spend time with her; many facilities will even allow you to take her for an outing if she's capable. We do still do that with my dad every couple of weeks or so.

This is a very hard decision to make and the answer we found for us isn't necessarily the answer for anyone else. Perhaps your mom's doctors could give you some feedback about nursing home vs. home care. They understand how dementia and other diseases progress and the impacts on a person and the care levels required.

Above all be sure to care for yourself because if you're stressed out, burned out, whatever you won't be able to take care of anyone else. Hugs to you, Lisa.

 

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Kathy lynn answered...

Nursing homes will not give your mother one to one care that she needs. They don't have the staff and they don't care. It is a job. If there is any way possible to keep her at home, do it. I understand there are times that is impossible to keep a loved one home. Nursing should be the last resort. We had a aunt that had great care at home for five years. No bedsores, no abuse only the best of care. The money ran out and she was placed in a very nice looking nursing home. One of the best in town. She was there for 15 days before she died. On the 13th day, we came to visit her, my cousin was trying to feed her and she could not swallow. She seemed to had another stroke. We demanded to see the charge nurse. While they were putting her to bed, we saw brusing all the right side of her. We demanded that she was taken to the hospital. It the hospital, we were told that she had been dropped ten to twelve days before and has laid in the nursing home with a broken hip. She had been dropped and had another stroke either the first or second day there and we were not told nor she was treated.

 

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FrancesC answered...

While it's very true what you say "Nursing homes will not give your mother one to one care that she needs." I don't think it's fair to categorize all nursing homes with the statement: "They don't have the staff and they don't care. It is a job." Many facilities do have very caring staff. As far as keeping a loved one at home, not everyone is equipped to handle the day-to-day stress of caring for an aging relative.

I can't say that my dad's stay in assisted living has been wonderful. We moved him from one facility to another after just five months because of unexplained bruises, improper sanitation procedures, and finding medications on the floor of his room among other things.

ANY facility is going to have problems, whether they are "very nice looking" or "one of the best in town".

The family of the resident in the facility must be vigilant to ensure proper care, proper reporting, and proper treatment of the resident. Should any problems arise then reporting procedures for the facility should be followed first. After that most states have regulatory agencies that have additional procedures for correcting problems.

If you find response to the problems to be unsatisfactory at any level you need to seriously consider moving to another facility.

 

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frena answered...

this isn't an all-or-nothing choice, if that helps at all. you actually have 3 choices -- nursing home, your home and small care home that might offer the care your mother needs.

also, should you have your mother home, let Hospice be part of the picture. you would get great help from them, including actual people help. i believe, just by her health conditions, your mother would be eligible.

find out whether her Medicare plan allows paid help (contact your local senior services), or whether your state pays family members. then you can also hire in helpers -- and you should. your mother's care is not a one-person job.

if you choose nursing or care home, read the inspection reports (they must show you, by law) and you'll get to know their issues and strengths.

You can still have your mother home for visits even if you choose nursing home care. or you can choose respite relief care in a nursing home when you need a break.

my own favorite choice for dementia care is the small care home with up to 6 residents. check those out in your area. it's the best and most supportive care, if other major medical issues don't need nursing. nursing homes are never the best choice for people with dementia. they don't need nursing for dementia, they need companion care. small care home welcome family visitors.

so talk it over with senior services, go to one or two support groups and get mutual help, support and information. Then decide.

please don't dismiss care staff. i've worked in the field for 20 years and it's amazing the love and caring among them. when it isn't, it's usually because they're underpaid, over-worked and not being appreciated. don't make any assumptions -- do your homework, think it through and you'll know what you want. and don't forget the mix-and-match approach.

 

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Lisa McIsaac answered...

Thank you everyone for your advice and ideas. It is so good to hear from people that have already been through this. My emotions go from secure in my decsions to completely doubting myself. I suppose that depends on the kind of day my mom is having. I visit her every day at lunch and usually have a nice visit. She is making friends and seems to have quite a social life. She was isolated at home with only a home health aide and the TV for company. We had just started going to an adult day care two days a week when she got sick. I think that is good alternative too. But now I realize that my husband and myself can not do it all by ourselves. I am still weighing my options and understand that I can change my mind whenever i think it may be necessary.

 

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SandyON answered...

This is really a difficult decision to make but please understand that when you're dealing with someone with dementia if you can't be easy going and relaxed it will take its toll on you. It is a really difficult disease to deal with. I love my Mom dearly and told my Dad when he passed away 20 years ago at 71 that I would look after Mom. Well Mom is now 97 and was doing quite well until the dementia hit her. I need to pray for patience every day. My Mom doesn't want to eat (she drinks her food) I try to make smoothies for her 2x daily and vary what I put in them. I try sometimes for over and hour to get her to drink one glass. It is so stressful for me when she won't drink. I'm a single 66 yr. old and a diabetic and have atrial fibrillation and other heart arthymias and sometimes I feel like I'm going to collapse! I don't know if Mom even knows me anymore - I think she might as she tells me how very much she loves me and I tell her the same. I work full time but have a Personal Support Worker come in and stay with Mom all day although I still do most of the work, after I come home from work. I don't have any family support and get extremely tired. My social life is zilch! I don't have an out except for work.
I guess what I'm trying to say is that it is wonderful if the person can be at home and you know what's going on with them. When they are in the nursing home it's entirely different than being with their loved ones - but you need to have the patience to deal with the dementia and you need to have a life as well with family support. God bless and I hope you make the right decision.

 

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Sholdy answered...

Although there are exceptions, placing a dementia patient into a GOOD, reputable nursing facility is the best decision for everybody involved. The reason is that, in a GOOD home, the people to care for your loved one gets to go home and rest after their shift and rested people take over. They get time off and they aren't alone. At home often times there is but one person that provides the majority of care around the clock day after day, month after month.

It is often the case that, when a spouse cares for their husband or wife with dementia, they get physically and emotionally drained and, sadly, they pass away before the dementia patient.

This happened with my mom. She passed away while caring for my dad, who has dementia. She wouldn't let us put him into a home and didn't take any respite. My dad is still alive and physically healthy. He's actually in much better shape now because of the care he is getting. At home with my mom, well, she couldn't tell him what to do; what he could or could not eat, when to take a shower or brush his teeth... Now he's clean and he's slimmed down nicely. Also, he's happy.

I miss my mom terribly, and wish she had let me put him into a proper facility before it was too late for her.

 

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vee66 answered...

my mum was diagnosed with vascular dementia in jan of last year she must have had it for years as now she is so bad that she needs 24 hr care we looked for care homes that were offering what we needed and we found a wonderful one who really care about the people who are in there we did try to care for her at home but dad has mild dementia as well and it go to a point where we couldnt look after her for the amount of time she needed she is at end stage dementia now so we just have to be there for her at least now we do have the energy to visit them and just be their children my dads dementia has worsened and they have managed to get him into the same place with mum its so sweet to see them holding hands sat in day room the staff think its fantastic they are still in love after all this time so all i can say is go look at as many homes as you can and make an informed desision from there xx good luck hun xx

 

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mimi3*** answered...

My mom and dad moved from Texas to The Pacific Northwest and moved in with me and my husband in February of this year. It has been 6 months of mostly hell and great stress. My dad has a knack for agitating my AD mom because of the way he talks to her and interacts with her. He can't be trusted to be alone with her because he doesn't pay attention to her.

I work outside of the home 3 days a week and we have a caregiver on those days. Luckily, she loves my mom and the feeling is mutual. The rest of the week it's pretty much all on me 24/7. My husband tries to give me some relief on the weekends as much as he can. I don't get a whole lot of sleep because I can hear mom rearranging her room in the middle of the night.

We have tried frequent med changes for the constant mood swings. I feel like a yoyo and am constantly on edge because she can change on a dime. There was a period of time when she was aggressive and delusional. Now mind you, she weighs 105lbs and is 4"6" tall. We had to take her to the ER because she said she was in severe pain and it took an orderly and a 6' guard to hold her down so they could sedate her enough to examine her. Turns out she had fluid on her lungs and a UTI.

I love my mom so much and want to do what is best for her, but she needs so much more than I can give her and it will only get worse as the disease progresses.. I can no longer handle the stress of having both parents living with us. If it isn't one having an issue it's the other one. We are looking into an Adult Family Home for mom and an assisted living apt. for dad. I think they will both be happier and my husband and I can have our life back.

This has been our experience, but yours might be totally different. But for your sake, I would suggest a whole lot of soul searching before you make a decision that will affect your whole lives.

 

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An anonymous caregiver answered...

After 2 long years of moving my mother from home alone with my sister who neglected her , took advantage, and finally took over her home while my mom was in assisted living ...to hospital again and again ...foster cares homes.....long story .....short...finally what I did try to avoid ...the nursing home with hospice....where , to my surprise ..she has the best care of all. Of course, I feel sad , guilt ...you name it. I visit everyday ..and now she crys and begs me to take her home. Her home has since been foreclosed on and the sister long gone. I cant take her to my house .for a number of reasons ..also have a disabled adult son. The staff at the nursing home are excellent ....even though this place got low medicare ratings......maybe they are good because of hospice and me being there so much. I dont know. My mtoher is actually improving physically......but her mind is dimishing ...she is afraid all the time and confused..but knows me ....It is the worse disease Ive ever seen...cruel ........torture.......and nothing one can do. I asked no more tests etc......my mental and physical health is dimishing. I am so in need of support . My siblings are no help ..but are critical and attack me any chance they get.

 

sheilamcc960 answered...

I appreciate reading all of these responses and the consolation realizing others are in similar boats with their loves one. My mother was diagnosed with severe dementia probable Alzheimer's in the summer of 2011 and has been institutionalized since. No doubt, whether a loved one should go to a facility or stay close to family depends on the circumstances or person's illness. The consensus in the case of Alzheimer's is to keep the person with family for as long as possible, this should have happened for my mother who had five children (I am the youngest daughter) and someone could have stepped up... My siblings need to be comfortable and as a result my mother's illness has progressed to the point her aphasia is profound. She is also intensely unhappy at the nursing homes and no one could blame her. I agree they do not care. In a nursing home, the nurses and cnas are too overworked. The nursing home in CT where my mother presently has been for two years this March, is an abyssmal failure when it comes to dementia care.. they do not meet her needs. She was without a bath/shower for approximately half a year and had 2 UTI's! There is evidence these infections contribute to cognitive decline. I have four know-it-all siblings to fight with and am not the POA; consequently, my mother remains at this facility, lonely and unmotivated. If there is any way at all you can take your loved one in, do it. Try. At least, later, you will look back and know you tried to love them with all your heart, open your life to them in their suffering and your conscience will be at greater ease.. a benefit I will not have in the case of my beloved mother.

 

CaringDenise answered...

Thank you to everyone who has shared about their experiences with this difficult decision, in caring for their loved ones. There isn't one solution that fits for all families -- each family has its own unique needs and preferences, and it's wonderful that we have this forum to share insights with one another about what has and hasn't worked in caring for our family members. As a friendly reminder, please keep these guidelines in mind in participating here:

If you see a post on our site that seems to be outside those terms, please get in touch with our team immediately via the blue Feedback tab, or the Contact Caring.com link (at bottom of pages), or via moderators AT caring.com. Thank you! And many thanks to Kay Paggi as well, for volunteering her time to share her expert insights in the Ask & Answer forum as well.

 

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mimi3*** answered...

Hi Sheila, I'm so sorry to hear that the NH your mom is in is an abysmal failure. We have been fortunate enough to find a NH facility that has a separate dementia unit and they are awesome. Yes, there are issues, as there are with any facility but we address them with the staff and they are taken care of.

Is there a possibility of looking into another NH for your mom? Medicare has a web site that has a nursing home compare feature and that's how we found mom's place. We went to visit the top two places on the list, were equipped with lots of questions and made our decision.from that.

I don't regret putting mom in the facility, but do still have guilt feelings about it. I visit her as often as I can and we enjoy our time together. As I said in my earlier post, taking care of both my mom and dad 24/7 was taking a toll on me and my marriage. Intellectually, I know it was the best decision for everyone.

Blessings to you!

 

CaringDenise answered...

Hi everyone, Just an update from yesterday: A member of this conversation asked that his/her comments be removed. We've abided the request, and removed others that were directed at that individual. Please contact our team via the blue Feedback tab, or the Contact Caring.com link (at bottom of pages), or via moderators AT caring.com if you have any questions about using Caring.com or how to update your account. Thank you!

 

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An anonymous caregiver answered...

Try finding something decent for a parent who is in End Stage Dementia with Behaviors AND Terminal Cancer. I had a choice of three toilets in the Cleveland Ohio area and toilet number three just violated her directives tonight.

All of you need to start harassing your local,state and national representatives to death. They are the bastards that are allowing this pathetic level of care to exist.

I've got about 70 days of Medicare left before I have to grovel to Medicaid. For those of you who haven't been through that process, go buy a giant jar of Vaseline. It is unmerciful.

It's time to vote a lot of useless assholes out of office.

America, Land of the Fucked!

 

 
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