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My 90-yr-old mother has late mid-stage dementia and aphasia. I have been caring for her in her home for two weeks every month and then my brother has her in his home for the other two weeks. When she is at his house, she is confused, does not know who he is, and constantly wants to "go home". Sometimes when he brings her back to her home, she does not know where she is or where the bathroom is.


I know routine is crucial for a person with dementia, along with familiar surroundings. Recently, my brother has told me that he can no longer have Mom at his home. He says caring for her is too stressful for him. And, truthfully, Mom's hygiene is not at the top of his list since he is a male, which is a negative for Mom. He says we need to place her or her care will be 100% my responsibility.


I found a Memory Care facility about 5 miles away from my home. There are 4 memory care "cottages" that house a maximum of 16 people. There are 3 caregivers during the day and 2 at night, plus the House Manager is always there. All the residents' rooms open on to the common area. They can see the dining area, the activity area, the TV area, etc. as soon as they open their door. No long halls to wander or get lost in. The cottages are really nice and she will have a private room with a private bath. As a bonus, this facility has had NO COVID! I can do an in-room visit as long as I have had a Covid test within the last 14 days. There are also patio visits and window visits that don't require Covid testing for me.


I have spoken to a woman who lives near me whose husband is a resident of Memory Care at this facility. She says he is well-cared for, the caregivers who work in his cottage are wonderful (caregivers are assigned to one cottage and do not work in the other cottages), the food is good and they keep him clean. There are activities every thirty minutes.


The problem is me. In my mind, I keep seeing Mom there, confused as to where she is, afraid, lost, alone and feeling abandoned. No doubt, she will cry and beg to "go home". She might even pack her things and sit in the lobby, waiting for someone to "rescue" her. Just thinking about this breaks my heart. However, there is that remote chance that she will adapt and like it there with a routine and schedule that she does not have with me.


I love my Mother and have been caring for her for almost 5 years now. I know she is not going to get better and that caring for her will most likely get to the point where I can no longer do it. She needs socialization, people her own age to relate to. Covid is a concern, for sure. That's one of the reasons I have not had in-home care for her.


Am I being selfish to consider placing her in MC? I am 71 and my significant other is by himself for two weeks each month as it stands now. He has not complained but, I think after 5 years, his patience is wearing thin. He says placing her in this facility is a "no-brainer". It is close to me, beautiful, has a good reputation and I have a personal recommendation from someone who has a loved one there. She won't have the love I can give when I care for her, but she will receive better care than I can give her. Why am I so conflicted?

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I think you should try the facility. You can always bring her back if it doesn’t work. I tried it with my mom for 2 months. But she called me over 70x a day & everyone else she could find in the phone book. So we moved her back into her house & put 24/7 health aides there with her for 5 yrs. Now she’s with me in my home. Everything is an adjustment that becomes a routine. Dementia does get worse with change though.
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You are not being selfish placing your mom in a place where she can get 24/7 care. The routine and consistent environment will reduce anxiety. If she is fearful and anxious in the current care routine of shuttling between your home and your brother's home, consider that the consistency will reduce much of that. If she is still anxious after moving in to a memory care facility for a few weeks, her doctor can prescribe a mild anti-anxiety agent to help her feel more comfortable. Your visits will help her to feel valued.

You may feel conflicted about not being able to care for your mother anymore. Many families have a value of caring for their own seniors at home. Usually, this burden may fall on the women in the family. When families were bigger and extended family lived in close proximity, many family members could take turns to care for a senior that required 24/7 care. That standard is hard to maintain without "the other family members" to share the burden with. Maybe it would help to shift your value from having to personally provide care to making sure your mom receives quality care. It appears that you will be one to see her frequently and will make sure she is doing well. If you are willing to do so, you are serving her in ways she can not do for herself.
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Imho, you should place your mother in the Memory Care facility both for her AND you. As she is confused with the present arrangement, give her some measure of stability. Prayers sent.
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Yes, yes, yes...Place her now before you lose the spot. Having the same routine is
the foundation to sanity for Mom. Hurry with the transfer.
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Have you considered that you may be being selfish to NOT consider giving her a try in a cozy pleasant home where you can visit her every day, if you choose.

Your comment that “she won’t have the love(you) can give” may be true but definitely may not.

My mom was cherished in her care setting.

You are ”conflicted” because you DO love her dearly. I agree with your SO. GO FOR IT.
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The short answer is guilt.  You have to let her go.  In some ways you are saying goodbye to her and it hurts.  It is time to do for you and your significant other.  You already know some of the things that may happen when she goes, but she is experiencing them with you and your brother with the back and forth.  I think the setting will be more constant and over time, she will grow less anxious.   You are a good daughter but it's time to let Mom go.
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Texas,
I have been caring for my mother for 2 years also, after a moderate stroke. I have the same concerns about placing her somewhere because of all the horror stories, but reading this thread has me wanting to look into a good MC facility. During the summer days, my mother loves to be outside walking, or sitting in the porch rocking chair, but during the winter, she hates the cold and cannot get outside. So she just sits around, watches a little TV, walks a little in the house, but is not interested in reading, puzzles, playing cards, etc, all the things she loved before dementia took hold. So maybe a MC place could provide activities she could enjoy. One of my questions (among many) is how do you all AFFORD it??? I have looked online and the average cost is $5000 PLUS per month? My mother isn't poor by any means, but the cost would deplete her savings in a few years. Does anyone have knowledge of help with the cost? She has Medicare and a supplement, but I do not think it covers dementia care.
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BarbBrooklyn Jan 2021
Call your local Area Agency on Aging. In some states, Medicaid will pay for care after some years of privste pay.

Consulting an Eldercare attorney who is familiar with Medicaid in your state can be very useful in this process.
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Let us know how it goes, Texas! We care!
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When my Mom moved into ALF and 3 months later Memory Care at first she wanted to check out of this hotel, then she was in a college dorm looking for her classes, etc. It was sweet and sad and the best thing for her. In ALF it was up to bher to attend the activities but in MC they draw them out to the main room and there always someone to talk to etc. You are helping her by placing her there, and saving your own life at the same time. Yes for the first 6 months I struggled with "they can't do it like I can" but I realized as long as she was safe, fed, clean it was not important if things were done differently. She has been cared for and loved for 3 years in memory care, has no idea who I am or where she is, move her sooner rather than later, you will be glad you did.
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texasrdr22 Jan 2021
GrandmaC, thanks for your reply. I'm so glad MC worked for your mother. I'm taking Mom to the MC place tomorrow to have her "evaluated" by the nurse there. Seems as if we are moving forward with her placement. I worry that her inability to speak using understandable words and her poor hearing will make it difficult to communicate/interact with others. She is pretty much a loner, although tries to interact with family members. She used to be a social butterfly and loved to tell really funny jokes! She played golf and "lunched with the ladies". I hate this disease!!
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We moved my mother to MC from a SNF last year. It was the best move for her. They had a routine of 7 daily activities that all residents are encouraged to take part in. No TVs in rooms because they want the residents out of their rooms, even if they just sit and watch.

The difference in her was remarkable. The facility reviewed her meds and took her off several that had sedating side effects. She went from sleeping all day to being alert and talkative. Mom enjoyed the crafts and watching TV in the
common room.

Now that a Covid vaccine is available you should definitely consider placing your Mom. Social isolation is terrible for the elderly. Your Mom might have a few weeks of being unhappy and disoriented but it is worth it in the long run.
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katepaints Jan 2021
Socialization is so important. My brother (64) who most likely has dementia—we’re waiting of tests—lives alone. I’m 1500 miles away and his daughter works full time and is a college student so she sees him once a week. I can tell where we’re eventually headed, he’s declined very rapidly. I think he may be much better off to be in a facility where he meets other people. As it is he sleeps a lot and while that’s a symptom I can’t help but think he’d really benefit from the stimulation of being around others on a daily basis.
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Texas; Let me tell you a story.

When my mom, at 90 (she was then the resident of a very nice Independent Lving community, where, contrary to my fears, THRIVED on the socialization and good food) had stroke and then fell, breaking her hip, I was convinced that admitting her to a NH was going to be the end of her. Amazingly, mom bounced back, learned to walk with a walker due to wonderful therapists and contrary to all those dismal statistics, lived there happily for 4 1/2 years.

The best thing was that there was no more stressful shleping her out to podiatry, hairdressers, dentists, psychiatry and the like. Almost all of her medical care was on site (even audiology and optometry) so that those stressful "let's get mom bundled up and take her out in the wheelchair in snowy Connecticut" trips were no longer necessary.

These folks are pros at settlling elderly folks in. It isn't like you are consiging her to some dungeon. The great thing about congregate care, in my opinion, is that there are many eyes on the situation, including supervisors. There is accountability to government oversight. Yes, there are horror stories, but it sounds like you have found a great facility.

I wish you well going forward with your plan.
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texasrdr22 Jan 2021
BarbBrooklyn, I absolutely LOVE hearing success stories! Thank you. I know what you mean about going to appointments. That is certainly not my favorite thing to do and I'm sure Mom feels the same way. A good MC facility will certainly take a lot of the care stress off of me. I pray every night that Mom will adjust to being there. If this does not work out, I don't even want to think about Plan B (me with care responsibility 24/7).
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That is the type of place my inlaws lived and it was wonderful. In my opinion and from my experience so it NOW and not later. She still has some cognition and you can tell her this is her new home. It will take a while for her to settle in, but having her furniture, pictures, etc from your house will help. I’d say RUN, sign up now!!!
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texasrdr22 Jan 2021
Thanks for the reply. It is nice to hear that you have had some experience with this type of facility and it worked for your inlaws. You make a good point about placing her while she still has some awareness of her surroundings. Food for thought. We have an appointment at the facility on Wednesday to have her assessed by their nurse to see in which cottage she would best fit personality-wise.
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Dear "texasrdr22,"

I think you really have answered your own question "Why am I so conflicted? - She won't have the love I can give when I care for her, but she will receive better care than I can give her. 

Everything else is as near perfect as it's going to get: MC facility is 5 miles away from your home, she'd be in a cottage with her own private room/bath, you actually know a woman whose husband is getting great care there, there's no COVID which is truly amazing in and of itself, you would be provided with several ways of doing visits, she'd be around others her age and there are activities every half hour - WOW!

No doubt, it's hard but please don't put the cart before the horse. You already have her packing her bags and sitting in the lobby waiting to be rescued - maybe or maybe not. You could do Facetime with her to see how she's responding to a new environment, let her know how close you are to the facility, tell her positive things in an enthusiastic manner as they will pick up on your own attitude. Believe me, I was 53 when I had to put my mom in an ALF and currently she is almost 96 and in MC. She likes where she's at and told me she was comfortable there - I never thought I'd hear those words.

Sometimes, it's more that WE need to adjust with the change that makes it so difficult. My mom's facility often sends pictures of her painting a bird house, making a craft for Thanksgiving, celebrating on New Year's Eve in the afternoon with snacks/drinks and a special 2021 hat. It always makes me feel good because she didn't do that at her previous facility.

The reality is we will have to let go "sometime" or our own health and relationships will suffer.

So it's the "love" that you and only you can give her when you take care of her that would be missing. Find other ways to show that "love" as a daughter instead of just a caregiver.

I wish you both the best!
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DILKimba Jan 2021
Excellent advice!!!
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It sounds like the place that you have found is ideal !!!
(almost makes me want to move in)
No one likes to "give up" and I think when caregivers decide to place their loved on in Memory Care it feels like we have given up.
No one likes to think that someone can care for XXXX better than I can and when you decide to place your loved one it seems like you are admitting that someone CAN take better care of XXXX than you can.
It is time for you to take care of you and your significant other and enjoy a bit of time together without having to worry about mom.
And I am sure that after 2 weeks away you spend the next 2 weeks getting caught up on things around your house then preparing to leave and care for mom again. Not a great way to spend the little time you have with your SO.
Mom will be a bit confused to begin with. She may decline a bit. But it sounds like this is a safer option for you as well as for her. You can not care for her full time.
NO you are not being selfish!!!
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texasrdr22 Jan 2021
Grandma1954, you hit the nail on the head! I feel I have failed in my mission to take care of Mom and, maybe, if I tried harder I could do it better. I have no doubt that others could care for Mom better than I do in a lot of ways. My hangup is, will they? You hear such horror stories about elder abuse in facilities. Yes, I have a personal recommendation from someone whose loved one is currently in this facility. I guess I will have to see for myself.

My SO is over-the-moon that placing Mom is at least in the planning stages. You are exactly right: I spend two weeks at home catching up on doctors' appointments, laundry, cleaning, etc. Then I have to get in "go back to Mom's house" mode.

I know she will be confused about this new place. I hope she does not decline, but it will probably happen. I pray there is someone there she can be friends with. I have no idea what I will do when I visit the first time and she cries and begs to go home. This decision should not be so difficult for me!
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My dad cared for my mom with as much loving care and devotion as you'd expect from a spouse of 66 years. I helped him as well, but I guarantee that if he continued to care for her, she'd have been dead by now. He simply couldn't care for her at the level she needed, and he was unable to get her to go out where she could be socialized. In the end, I'm convinced the stress of caring for her contributed to my Dad's death.

I moved Mom to a skilled nursing facility, and they, too, allowed her to stay in her room and be isolated. Again, if I'd left her there, she'd be dead by now. After seven months I moved her to a MC. She's been there for 18 months, has had activities, adapted to her surroundings pretty quickly, and until last month was doing remarkably well. (She's finally declining through no fault of the facility.)

Please do what's best for everyone and place her at the MC facility. They're experts at getting her acclimated, she'll have all the perks you already know about, and you'll be freed up to just love on her.
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texasrdr22 Jan 2021
MJ1929, your father sounds like he was such a wonderful man. My Mom and Dad were married for 66 years, too, when he passed away in 2013. Mom's dementia was just in the beginning stages then. I think the anesthesia she had when her broken hip was repaired two years ago was the beginning of a rapid decline for her.

Thank you for reminding me that the MC staff are trained in dealing with residents with dementia. They most likely have a lot of "tricks of the trade" that I certainly don't. And maybe care coming from a "professional" will be better received than coming from the daughter. Being freed up" just to love on her" sounds like a wonderful idea!
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I love my mother too, which is precisely WHY I placed her in a wonderful Memory Care ALF where she is looked after by a great team of caregivers 24/7.

I also love MYSELF and my DH and value our lives together, which are equally as important as my 94 y/o mother's life, and I recognize that God gave us these lives to live fully and completely, and not to be slaves to another's comfort in old age.

Every life matters. Not just the elder's life.

Most all demented elder's want to 'go home'. It has nothing whatsoever to do with a place, but a point in time where things were different and confusion wasn't the predominant factor.

Many, many demented elders pack their bags daily waiting to 'go home' too, which doesn't mean their unhappy or miserable, just wanting to go back to a point in their past where life was different. They can do that in Memory Care or at home. They tend to also rummage through their drawers 'looking for' things that don't even exist. Attribute this behavior to the disease, and not to something YOU are doing 'wrong' or something YOU can miraculously change.

Accept and grieve the fact that you lost your mother long ago to dementia. She's gone; the woman you once knew is no longer. Place her where SHE can get the greatest level of care and attention/activity and interaction with people in the same situation she is in. That's ALL you need to focus on. She's not going to remember where she is, whether it's in your house, your brother's house, the Memory Care..........or the moon. So as long as she's in a safe place, a clean place, an upbeat place where caregivers are there to help her, where can eat and sleep in peace, THAT is your prime concern. Not whether she's getting 'loved' properly or whether she's at 'your home' or her 'son's home' and on and on. She has a disease and IT takes precedence, nothing else. Treat it accordingly.

Wishing you the best of luck moving forward, with no guilt, no looking back, and feeling good about being able to visit your mom as often as you'd like. And being able to leave when you need to, also. Remember the need to care for YOURSELF here, too.
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texasrdr22 Jan 2021
Lealonnie1, you always have such wisdom in your replies here. I appreciate everything you wrote. It was as if you had a camera in Mom's house watching her rummage through the very same drawers she rummaged through two days ago. You really touch on all the important factors: in MC she will have around-the-clock care, attention, activity, socialization with others like her, routine, a schedule, meals. Such important things.

I sometimes see glimpses of pre-dementia Mom in her comments, but that is rare. It is so sad. You certainly have given me a lot to think about.
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It sounds to me as though you are being selfish NOT to place your mom in memory care.

She will have a team of caring, trained folks looking after her needs, people who understand dementia. She will have socialization with a wider variety of folks than she can possibly have in a private home. She will have you, her loving daughter, who can go back to being her loving daughter and advocate.
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texasrdr22 Jan 2021
BarbBrooklyn, I agree with you totally. The more I think about it, I AM being selfish by not giving Mom a chance to have better care, activities, socialization, regular meals, and more. It would really be nice to be the loving daughter and not the "pill lady" and "the mean lady who makes her take a shower." It is my own imagination that is holding me back, picturing this frail woman feeling lost, abandoned, frightened and alone. I have to get past this and deal with whatever the reality is that comes along. Thank you for your sound advice.
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Why are you so conflicted? The place you found for her sounds great, your brother can no longer handle her care, and you won't be able to do it either 24/7, so there really is no other choice. Be grateful for the time you got to care for her, and also that you found a place close to you, where you can still keep an eye on her, and give her all the love you want. It's a win win situation for all. You might actually enjoy just getting to be her daughter, instead of her caregiver. Wishing you the best.
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texasrdr22 Jan 2021
funkygrandma59, you are so right! I can not care for Mom alone permanently. I am fortunate to have such a nice MC place nearby where I can currently do in-room visits with a current Covid test. It really is a win-win situation. Thanks for reminding me of all these important things.
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Yes. I agree with your husband that it is a "no-brainer". Call your brother and tell him that you want to go ahead and place her in the cottages. Sounds like he is capable of giving you some emotional support.
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texasrdr22 Jan 2021
NYDaughterInLaw, my brother is coming here on Wednesday and bringing my Mom. We are taking her to the facility for a required "assessment" so that they will be able to assign Mom to the cottage that is the best fit for her, resident-wise. My brother is much farther along in the idea of placing Mom than I am. He would do it today, if possible. I'm not there yet. But, I'm getting there, slowly but surely.
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This facility sounds too good to be true.

Mom is not going to be 'at home' wherever she's placed b/c she no longer probably remembers 'home'. My sweet granddad was always asking to go home and he WAS home. When he was moved to a NH in his neighborhood, he still asked to go home.

This sounds like an ideal fit for mom. Put your sense of guitl behind you, take the opening and spend whatever time you feel is right with mom.

You cannot make her better, in fact, the constant moving may make her worse (not trying to guilt you, but stating a simple fact). Routine is what will help her the most. And having 'fresh' kids to visit her--whether she remembers you or not, will also help.
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texasrdr22 Jan 2021
Midkid58, you are absolutely right. She will not know where she is regardless of the location. Intellectually, I know that moving her to my brother's house every two weeks is not good for her. I guess I believed that having those two-weeks off would be the only way I could continue to care for her. I really believe that she will not know me when I come to visit. When I dropped her off at my brother's last week, I was in a different room from her unpacking her stuff and she asked my brother, "Where is that lady who brought me here?" I hate this disease.
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I think that you are very lucky to have found such a memory care facilitiy. It sounds much like the ALF my bro lived at and they were wonderful to him. It is well staffed. Your mother right NOW is confused by the back and forth. I think you should no way ask yourself to take on full care. My advice would go for this facility and do it quickly. There is no answer to the confusion of our seniors suffering dementia, no matter WHERE they live or what the circumstances, but in all truth I, were I your Mom, would rather go where you describe than to your own house, to both burden your family and to destroy the loving relationship we have. I am 78 and it is not something I say without thought and without the knowledge of where we are all going.
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texasrdr22 Jan 2021
Wise advice, as always, AlvaDeer. I like to think that if Mom had her wits about her, she would not want her children to be responsible for personally caring for her. I worry about the whole Covid situation and placement during the pandemic.
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I am 61 with a 90-year-old mother much as you describe, and I am often overwhelmed and exhausted. You’re 71 and doing so much more. It sounds like a good place you have found, and very close to you.
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texasrdr22 Jan 2021
I truly understand the "overwhelmed and exhausted" part! Thanks so much for your reply and good luck with your mother.
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You are conflicted because your roles are reversed. It is quite strange for our brains to make the switch from being cared for to being the one who cares FOR.

My mother’s Memory Care facility is similar to the one you are looking at.

It sounds like your brother is seeing things for how they really are. Your life is in an upheaval, and things will only get worse. 2 weeks are looking like they are leading to 4. What then?

You want your life back. Time to take it.
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texasrdr22 Jan 2021
Good advice. I hope I can get to the point where I think I deserve to get my life back. This is hard. Thanks for your insightful reply.
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