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My mother has been living in my home for the past six years. She is in good shape financially and in relatively good shape physically. Her state of dementia is severe. Most of the time, having her here is doable. I am able to have a caregiver during the day for about five hours/day. The struggle is what is the right thing to do. I have always believed in the concept of caring for our ageing parents. When I read the comments from folks on this forum, I almost feel like a fool. It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility. At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer. Then, I agonize over how poorly it would work for her. She is needy, like a child needing constant attention. I had her in senior day care and she was kicked out because they couldn't give her the attention she was demanding. I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere? The internal struggle is so difficult because I know that having her here affects us all. My daughter, who has been here for the past year due to Covid, has really bonded with her grandmother. My daughter adores her grandmother and the time that she spends with her. The antics that my mother exhibits drives me crazy and my daughter is able to see humor and be compassionate. I can be that way much of the time, but then there are those days when she is going through her late afternoon craziness and I just want her gone. I know that she will continue to deteriorate. She has since I first moved her into my home. I just don't know what decision I can live with internally. For a little background, my father was dying and I drove him across the country and into a facility for his last month. He didn't want to die away from family. I saw him sporadically while he was still alive since it was an effort to find the time to be with him. That was two years ago. To this day, I suffer that I wasn't available for those final weeks. It haunts me. I don't want to feel that way with my mother.

This is always a difficult decision to make. You are not wrong or right to keep your mom at home. Most people asking for help here are at their wits end and extremely burnt out and in those situations it is very valuable to know that placing their LO in a facility is not a bad thing to do.

Care giving someone is hard. Care giving someone with advanced dementia is nearly impossible to do. I am glad that you are getting 5 hours of help a day. And your daughter spends time with her too. That all helps make the situation somewhat livable although still quite difficult and demanding.

Can you talk with someone about this decision? Make yourself a pro/con chart? You don't have to do as much as humanly possible to be able to live with yourself without guilt. You deserve to have a life and freedom to be happy and spend your time in ways that benefit you.

Your mom is probably happier at your home. She's comfortable there, etc. BUT she is also a lot of work and as you know it is only going to get worse. 24/7 care is VERY demanding and you will get burnt out and suffer physically and/or mentally when you are doing too much.

I would start looking into places. Find one or two you like. If there's a waiting list, put her on it. You can always pass at the time and go back to the bottom of the list. When she has a bit of decline, that might be the proper time to move her into a facility.

Again, there are no right or wrong answers. You don't have to wait until you are beyond done. It is reasonable to put yourself on the list of important things and not just put your mom first in all cases. There are pros and cons to either option and do not beat yourself up about the cons of placing her somewhere. Nothing is perfect.

You need to forgive yourself regarding your dad. You did what you could at the time, what you thought was best. It's really not fair to second guess yourself. Even if your solution wasn't perfect, nothing really is so give yourself permission to be an imperfect human being. Like the rest of us.
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BeachWish Apr 26, 2021
Such great advice,,,thank you
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“It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility”. Placing someone in a care facility isn't so much about the LO as much as it is about the caregiver. The fact is that most people living with dementia live out their lives at home. I always suggest that people know their caregiving limits. Certainly that's easier said than done. Although there are times that your mom's behavior may drive you crazy, as you say, at what point will her “antics” overwhelm you? At what point could it physically and/or mentally affect you? Only you can answer that. Caregiver complaints of constant headaches, stomach problems, severe stress that affects their own life, not wanting to get out of bed in the morning knowing what the day holds, or having to deal with their LOs incontinence are all reasons to consider a “new home”. And then there are safety issues such as leaving the stove on, wandering out of the house, confusing dangerous liquids with similar looking safe drinks in the home, etc., etc. For the most part, your mother doesn't know what her care requires of you. You must take care of yourself.

Remember, if you decide to relocate your mom, that although she may no longer be in your direct care, you are still caring for her ( and yourself) in providing her a safe, comfortable environment where the staff is trained to provide for her well being.
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ExhaustedPiper Apr 23, 2021
"The fact is that most people living with dementia live out their lives at home."

Hi- do you have a source for this info by any chance? TIA!
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Only you can answer how bad this stresses you out. My mom was difficult living with us. In a way, MC has given her the independence she needs while keeping an eye on her. My mom takes the direction of most caregivers better than me. She still hates days being there, but has many great days. She laughs more! The activities they have at MC make my mom feel like she's at school, and she has always been a straight A student :) Now that things are opened back up, I can go see her anytime and take her out anytime. I realize that we were not enough for my mom. Our days of being at work, coming home, and then relaxing were boring to her. A good MC keeps them active and thinking all day where they are ready for bed in the evening. I've joined a team. I'm not neglecting her. Don't get me wrong, the whole situation still stinks. I get sad almost everyday thinking about it. I know if my mom was in her right mind, she would tell me not to feel guilty. My parents were married for 60 years, raised us 4 kids, had a blast with their grandchildren, and then my dad passed 4 years ago. She ALWAYS wants to go back to that home where we are all under one roof...and somedays, I do too. I pray you find your best answer.
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disgustedtoo Apr 23, 2021
This is one aspect the nay-sayers harp on... Oh, they'll die of boredom, they'll be abandoned. I wish those people would stop that dirge. It is a choice that is available to some (not all can afford it or qualify for Medicaid, which in most cases doesn't cover AL/MC anyway.) However we the people overseeing their care need to be diligent in choosing the right place AND be there often enough to visit and check on them and the care they are getting. Not all places are created equal!

My mother's place was always coming up with activities, mostly in situ, but some outings as well, for those who could still manage them. Any time I visited (varied day and time, no warning to staff!), mom was clean, well fed and relatively happy. While she wouldn't participate in some activities (light exercise, oh no, I did that for years, I don't need to do that now!), most of the time she would join in.

Socialization is something that is recommended, to help keep the LO "stimulated" and active. One person at home doing ALL the tasks needed can't possibly keep the LO entertained most of the day! It is one of the benefits of choosing to use a facility. There are perks either way, depending on resources available. So it comes down to finances and how long one can continue to give every day. There's no real right or wrong choice, but all too often the choices are limited.
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There’s nothing easy about such decisions, no matter which way you go there’s doubt, sadness, and challenge. It’s time for your mother to move when you reach a point of exhaustion, burnout, and simply knowing you can’t keep it up. Then residential care becomes the kinder option for your mom as an exhausted, burned out caregiver isn’t good for either of you. Either way, you’re a caregiver and your mom is blessed to have you in her corner
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LucyCY Apr 26, 2021
Just wish social services would be helpful. I've just spoken to the manager of a privately run facility who informed me that my mum could in fact go into private care and that social services could partially fund it. Something SS did not tell me so I've spent months applying to council run facilities and with no joy!

Your response about being a "burned out caregiver" is me all over x
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When my Husband was diagnosed with Alzheimer's I said I would keep him at home.
I later changed my thought process to "I will keep him at home as long as it is safe for HIM for me to care for him at home AND as long as it is safe for ME to care for him at home."
Thankfully with the help of Hospice and the VA I was able to keep him at home.
Thankfully he was also VERY easy to care for he was always compliant. And luckily or not with each "problem" that came along there seemed to be a solution that came with it.
So base your thought process on safety
Is it safe for HER that you are a caring for her in your home?
Is it safe for YOU that you are caring for her in your home?
Do you have Hospice in that will provide you with all the equipment and supplies you need? I can tell you right now without the equipment I got from Hospice I would have had to place my Husband. A Sit To Stand was a lifesaver (and back saver) then progressing to a Hoyer Lift.
I also said with many decisions I made about my Husband I was ruled by 2 organs. My Head and my Heart.
Safety is a Head decision.
Letting her eat a candy bar when she really shouldn't that is a Heart decision.
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Beatty Apr 26, 2021
Excellent, just excellent!
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Tinder, I would wager that there are lots of folks who have elders living in their homes doing just fine. At a Zoom funeral recently, an acquaintance said that it had been a blessing to have her elderly MIL living in their home until her death. One of my cousins had her blind MIL live with her family; I never heard that it was too hard or a burden. (Both of the see families had a lot of caregiver hours; all the spouses were employed full time).

Folks who hang out here are the ones who are having problems-- either the elder is mentally ill, needs much more care than can be given at home, is unsafe due to wandering or causing fires, threatening physical violence.

Or they are simply folks who aren't cut out to be caregivers, have been guilted or shamed into giving up their livelihood and/or home, or who have had an elder "dumped" on them.

You are not a fool! Caregiving for a parent at home can be wonderful, if you have the space, aptitude and help required.

My personal take is that many elders thrive in congregate settings with multiple people to interact with and professional medical oversight. To each his own.
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If you’re asking the question, then it’s likely time.
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elaine1962 Apr 26, 2021
I agree.
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The internal struggle. Oh boy, I can relate. I don't have an answer for you as I haven't found one for myself. I agree...so many comments about putting yourself first, etc. That's great in theory. What about all the times the parent put us first? And...there lies the guilt. Yet, I write this from my Dad's kitchen table while wishing I was in my own home. Every morning I know I need to hire help but then I see him walk down the hall with no pants on, "leaking", (refusing disposable undies) and wonder if it's even worth going through the process. We just hired for my Aunt...2 shifts of 4 hours each week. Went through an agency and it's taken 7 mo to find a helper who is dependable and not using the caregiver job as a VERY temporary mean of making some money. I tried to "sell" the retirement living lifestyle to my dad 2 years ago. He flat out said he doesn't want to be surrounded with "old people". (He's 81, still works because he loves it, but has no interest in taking care of himself, his house, his finances.) He just doesn't realize the amount of time and energy he is taking. Things and people in my own life are being neglected. At some point, patience will wear out. I know I need to suck it up and hire some help, but it feels awful. Truly no advice from me...just wishes for a peaceful state of mind for you.
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Lymie61 Apr 26, 2021
If your aunt is his sister and they are close might they both be more apt to consider moving to the same facility were they would have each other every day if they chose? I don’t mean the same room or apartment just the same place like living next door to each other.
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Hi Tinder,
I write from the patients point of view. I was diagnosed with Early Onset ALZ in June of 2016. Most recently my Neuropsych Exam, said I've moved to Moderate to Severe Dementia. My DW and I disagree with the results and we have an appointment to discuss the results with the Doctor in early June. The Doctor says I should have 24/7 care, my DW and I agree I've moved in to the middle stages, but not severe needing 24/7 care.
I've told my DW and all four of my children ranging from 40-14, that when I am at the point that I can no longer participate in the day to day activities of helping out in the house then it is time to put me in a MC or Skilled Nursing Facility. I also contend I want to be placed 100mi away from our home so that my DW and children don't think they have to visit me every day. My DW is 8 yrs younger than me and I want her to go about living life.
Two of our three children live in other states leaving our oldest in his mid 20's living at home and our 14 yr old. My oldest 40 lives in another state he agrees with my position we talk, but have rarely seen him over the last 15 yrs. I've told all three of my adult children, when it's time for me to go in to a MC facility, let mom do what she want's to go on with life and don't give her any grief if she wants to date, or divorce me and remarry. Our two 20 somethings understand, I don't think the 14 yr old is ready to hear this, but we'll tell her when we feel she's ready. We've enjoyed 27yrs together married and dating. She has a lot to offer another man. and I want her to enjoy the rest of her life. She's never had any medical issues, we've practiced our faith ever since we started dating.
My point is that, you must do what is in the best interest of you your DH and children, and what you believe is right for your mother. Do not let outside influences lead you down a path you don't want to walk on. I watched my maternal uncle who was a Priest die from ALZ and my stepfather die from ALZ, they both were in MC Facilities. I know they received the best of care and were placed in the best place for themselves. The difference is one of my sisters worked in the facility my uncle was in, and my stepsister, lived near my stepfather. They were still both worn in to the ground. I don't want that for my family, and I've shared these thoughts for more that 20yrs, so this is not jibber-jabber on my part. I want my DW and family to thrive. I hope you find this comment helpful.
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People may be more likely to express themselves on this site when the stress of caring for a loved one exceeds the joy of doing so. Is your husband supportive of keeping your mom in your home? You don't want to jeopardize your marriage. Are you comfortable leaving your mom alone for a few hours? Others have noted the potential dangers with dementia. Are you able to physically care for your mom without putting yourself at risk? If you can answer Yes to those three questions, then no problem keeping her in your home. Just be aware that your answer tomorrow could be different than it is today. Ask yourself those questions often. A No answer to anyone of them will tell you it is time to move mom. ( Suggest you look at facilities now so you are ready to make a move when conditions warrant.)
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