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At home, or care facility?

My mother has dementia but in my opinion it is still early and I am glad to live with her to make things as easy as possible.

Thing is, my 67 year old sister just got married in another state where my brother drove mom to be at the wedding.  (I wasn’t invited because I have a missing front tooth: sis is the queen of superficial.)  While there a couple of things happened that I consider minor.  For example, after waking up, Mom would make comments like “Where are we?  What are we doing today?”  This freaked out my sister and my mother’s sister, neither of whom have seen Mom in over a year, and not since she was diagnosed.  Suddenly they are running around saying that mom needs to go to a care home, she is a danger to herself and others, and they are looking for a care facility.  At home mom seldom displays this confusion, though she will occasionally ask me things like “Are we the only ones here?” or “Was Carol here last night or was that a dream?” or “What day is this?”.  In addition her short term memory is going, and she sometimes uses the wrong word in conversation, though it is always close enough that I understand what she means.

My position is that mom should stay at home as long as possible, where her surroundings are what she expects, her friends are long-term and she has familiar things to do.  Also I believe that if she is moved to unfamiliar surroundings her confusion will increase, this will cause stress on her brain and her dementia will probably accelerate.

Their position is that in a care facility they will keep her safe, she will make new friends and have exciting new things to do.

What do others think?  Keep her home as long as possible, or move her to a care facility where she will be surrounded by strangers and strangers will care for her?

Thanks for any advice you can give.

User Posts

submitted by Christopher Luke on Saturday, 04/02/2011 - 2:39am

My mother was waiting in the loby of the assisted care facility.She had some of her cloths wraped up in a bundle waiting to go home.She cried out my name in a voice of panic,are you taking me home.Mom still cant understand that I had nothing to do with putting her in there!My sister put her in a hospital near home.She passed all her tests with flying colors,then they had to drug her to get her in the facility.She is much more confused than when she was home.If I only had the power of attorney,I would drive out there right now and get her out.I am so depressed,angry,confused.It's a cruel world !

submitted by chulaceci24 on Thursday, 03/31/2011 - 4:37pm

First of all I want to sympathize with you.  Reading your story reminded me so much of what we are experiencing with our mother.  My sister who lives in the same house with her is her care giver.  I agree that you should keep your mother living at home as long as possible.  We took mom to her geatrician recently and he couldn't believe how wonderful she is doing and confirm that the reason she is in this condition is because she is surrounded by her loved ones.  Had she been placed in a nursing home, she would be far off worst.  When you take loved ones away from home it confuses them more because of the new environment.  They need to be around the surrounding that they are used to.  If your mother is still able to, I recommend playing board games with her as it helps to keep the brain active.  We played parcheesi with my mom for a long time until the time that we noticed she was too confused and didn't remember how to play any longer.  I don't know how long ago your mother was diagnosed; however, I see she is still young.  My mother was diagnosed 4 years ago and she is now 81 years old.  If you saw her today you would not believe it because she looks so good for her age.Best wishes!Ana

submitted by lostinspace on Friday, 12/31/2010 - 5:00am

My experience with facilities, they ignore the patient. Fact, doctor says wife needs care at a facility, so took her to their choice since they're paying. Third day there, she is unresponsive, dehydrated, and pneumonia. Their doctor says everything is  fine. I took her out promptly and to the emergency room. Went to another facility, much better, but she begged to come home, so, brought her home and her she will stay. Hospice will be coming in soon, and stop by once and a while. Luckly I can take care of her, but other seniors I've seen cant take care of their partner and I feel for them.

submitted by Kathie Lynch on Tuesday, 12/28/2010 - 5:53am

I am beginning to think about alternative living for my husband who is in his 6th year of Alzheimers.  This is not something I want to do, but I think it's the right thing to do for both of us.  My three children live all over the country and all have young children of their own and I have no friends here.  We moved to our retirement home four years ago and I've been caretaking ever since........first for my Mom and now my husband.  Consequently, I have not had any time to form friendships.  In hindsight, I guess it wasn't a good idea to move when we did, but at the time I just wanted to fulfill my husbands and my dream to retire in the south, and I wanted to do it while he was still able to enjoy it. I'm thinking about assisted living with a memory unit but I don't know how I'm going to convince him that it's the best thing for us.  I was hoping that I wouldn't have to do this as long as he knew me and knew where he was.  Right now there are times when he does know who I am but there are more times when he doesn't know me.  At the times when he doesn't know me, he won't let me do anything for him such as bathing, brushing his teeth, etc.  Also, he is 6'1" and I am 5' so it is getting very difficult physically for me to handle him.I think that making this decision about your spouse is more difficult than if it were a parent.  Life has already changed as we knew it, but moving your husband out of your home is like writing the last chapter of your life together.  They don't call this the long goodbye for nothing.  I will not be too hasty in making this decision.  In my head I know it's the right thing to do, but my heart is breaking at the thought of it. 

submitted by starlight on Tuesday, 01/04/2011 - 2:13pm

My heart goes out to you Kathie. It sounds like you are pretty clear about what you need to do at some point, but it is still very hard. Some of the facts you describe may help make things clearer, for example, when you describe the simple physical challenges of trying to care for him when he won't let you and the challenges of your size difference.

submitted by annbar on Tuesday, 12/28/2010 - 12:01am

I also am taking care of my mother who has dementia and she is also a wonderer.  She has been going to day care for the last 6 months so I get a break to go to work on weekdays.  It is getting to a point that even with day care is hard for me to take care of her.   Would putting her in a memory care unit in an assisting living place a good idea or should I consider nursing homes? Thanks,Ann  

submitted by Jo G on Monday, 01/24/2011 - 3:36am

In many states, there are assessments available to determine the appropriate level of care.  I would talk to someone at a memory care assisted living facility as a first step or perhaps social services at the adult day care where you take your Mom. In addition to my husband who has LBD and lives at home, my mother is now in a facility.  She has specific medical issues that require nursing care.  Originally, she was in assisted living but an assessment was done after she lived there for a year and it was decided that she should be in a more appropriate setting.  We found a wonderful residential nursing facility in our community.  My mother adjusted very well.  There is continuity in the nursing staff and she has a "home" for which I am grateful.  We recently began to supplement her care with hospice services.  As is with these diseases, there is never a singular answer.  As needs changes so should care.Best wishes with your decisions.

submitted by Vivian on Monday, 12/27/2010 - 2:25am

I understand!! My mother-in-law would be "confused" out of her familiar surroundings.  When home, she was fine.  We "safetyfied" her house, extra phones, dial-type of microwave (either it was on or off) disconnected electric stove, etc.  I brought her a meal everyday and checked on her.  I was fortunate enough to live next door to her.  I knew where she was by which lights were on.  As time progressed, the time came to put her in a facility.  The first time the "social worker" tried to put her in a facility, I fought the system with the help of family members.  We gave her 6 months more at home.The second time came a hospital stay and in my heart I knew it was time for her to be placed in a facility.Trust your heart, your intuituion on such a big decision.  Be prepared for the day, but make the right decision at the right time.  The hardest part was trusting someone else to care for her.She got hurt at the facility from falling, black and blue from up dosage of coumadin, etc.  I suggest you find a place close to you that you would want her to be in, go at all different times to visit and talk to the personnel, attend all quarterly meetings with staff to review her case.  She was there for about 6 years, went through several different room mates, and considered her "room" her "home".

submitted by DonnaG on Monday, 12/20/2010 - 4:15pm

There are many valid, good reasons to find a facility for a loved one, but never expect it to offer more attention than an in-home caregiver, if the caregiver (and the caregiver's subs, which are essential) are there all the time. You didn't mention if you have to leave your mother alone. Maybe that is what concerns your siblings and your mother's siblings? And it could be that your mom can still be alone for limited periods, but I would understand concern about that. I think the suggestion for daycare sounds good, would allow you time to do what you need/want to do AND give mom some socialization. Another option is paying in-home caregivers to give you a break, or asking friends and family to come by and stay with mom.I think even the BEST facility is unable to provide as much individualized care as you can give. That's not a knock on facilities it's just part of the nature of an institution, even one that has the best staff around. And who knows if you'll be able to find or get your mom into the best facility around? I have a friend who works as an attendant for people who are in nursing homes, hired by famlies who want their loved ones to get individualized care and attention.There may come a day when you are unable to care for your mom as you would like, but you don't seem to be anywhere near that point, and there are several options available short of a nursing home. However, you (and my dad and I in our situation) probably need to be looking at facilities and finding the best one so that if something suddenly changes, we can move with confidence to the next phase of caregiving or get our beloved mothers on the waiting list perhaps (I am preaching to myself here).Your mom is blessed to have you with her.

submitted by Roxie1956 on Monday, 12/20/2010 - 1:12am

I was the same way as you are now, we try to keep my mother at home as long as we could. But I could not take care of her anymore, so we put her in a nursing home. By the way she is 87 yrs. old and I was told that she had dementia at 86. She is in a good nursing home and being taken care of around the clock. She knows that she can come home for a couple of hours, but not to stay. It is not a bad for your mother to go into a nursing home, she will get the best care anywhere you may put her in. I also have a family members that is like that, they don't come up to see her all year but at Christmas time only. My other brother still holds it against me for putting her in a nursing home, but she needs all the care now. Put her in a nursing home that you know or one that is close to your house. When she gets in there she will make friends, and the staff will take good care of her. You can go and see what the place looks like, and see what kind of things she can do during the day. Maybe she will like it, but it will take time for her adjust. She will and you will feel better that she being taking care of 24/7. You can also call to see how she is doing during the day or at night time. I hope this will help you and your mother too. I know that it helped me out, because I don't have to worry, because she is in a very good place.Roxie 1956

submitted by JeanneG on Saturday, 12/18/2010 - 12:21am

This suggestion is not likely to appeal to the queen of superficial, but if she really wants to hear about care facilities, she should attend a caregivers group meeting for several months. That would be an eye-opener!  Care facilities have their place, and sometimes that is really the only choice available. Dementia can reach a point where it is nearly impossible to keep LO at home. If that time comes -- and you'll know it -- work hard to make the best selection you can, and expect the effort level and especially the stress level to continue. It doesn't get easier to have a LO in a facility, it just gets different.Persons with dementia are at risk for various mishaps. But here is a newsflash -- they are at risk in their own homes and they are at risk in care facilities. Just because a place has round-the-clock staff doesn't mean somebody is standing there watching each resident every minute.Is your mom the type who would indeed make new friends among strangers? Some people are, and some are not. Some who enjoyed meeting new people and making new friends when they were healthy are less interested or able to with dementia. A day center might be a good environment for your mom to interact with other people, while providing you with a break. A day program provides an opportunity to make friends or to quietly be in contact with acquaintences, and to do interesting things -- some familiar and some new. (I woldn't call the activities "exciting" but I'm not sure excitement is what most people there are looking for.) I'd definitely recommend a good day program as a less drastic way to meet some of the objectives your family members have.I think it is real common for confusion to increase when traveling. If your mother's level of functioning didn't match your observations of her when she is at home, I'd say your observations are more apt to be a realistic view of her current state.It sounds like there might be other family dynamics going on in this situation. I hope your mom doesn't suffer because of it.It is hard enough to be a caregiver with the full support of other family members. I hope you can work things out in your mother's best interests.Hang in there!

submitted by PMHodel on Friday, 12/17/2010 - 6:56pm

I think you are doing exactly the right thing by keeping her home.  From some of the posts at another forum I belong to I have made up my mind that my LO stays home with me until I can't keep up.  Ours is the home he knows and loves and worked so many years for. Many people post that putting their LO in a facility is almost more work than keeping them at home.  They talk about having to go to the facility every day to make sure things are handled correctly and the LO is being cared for.  So many also tell of increased confusion after being moved.  It's better to get some help for yourself like house keeping etc so you can spend more time with your mother or maybe respite care for yourself.  In my opinion, keeping her home is the greatest gift you will ever be able to give your mother.  Keep up the good work.  I know its hard. Mary

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