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My dad has tried taking care of her but in turn his health has declined. My problem is I cannot get past the guilt of putting her in a home and the thought of failing her. I have always been super close to my mom and this is just killing me. If I could quit my job and take care of her I would in a second but unfortunately this is not an option. How do I accept the fact that this is best of her?

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Ok, I am at this place with my 91 year old mom. She recently had surgery and and after rehab I brought her to my home to stay for a few days to be sure she was confident enoughh to go home. It’s been 2weeks and I am convinced she is not competent to live alone anymore.
So we decided to have her try out an assisted living facility nearby for 2weeks and see how she likes it before she commits to a permanent move. It will be a huge change for her.
So to your question, I have been struggling with the same guilt. But after living with Mom in my small house for 2 weeks I truly believe that her moving to AL is the best thing for both of us. She will have medical and physical supervision 24/7, social interaction, and a degree of independence.
I can now concentrate on being a daughter, not a nag telling her to do her exercises, take her meds on time, get out of bed, get dressed, etc. I can sit and visit, talked to her, share memories without having to worry about laundry, diapers, filling prescriptions, and the other dozens errands that her care involves.
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By realizing that you cannot perform as a medical professional.
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By realizing that she needs more help than you or your Dad can give her is a HUGE step in helping her.
You and your Dad can now be the family that can visit and enjoy the visit rather than stressing about how to get Mom into the shower or bath, how to get her up each time she needs to go to the bathroom or needs to be changed.
You can sleep well knowing that she will not wander out of the house, fall down the stairs, turn on the stove while you are sleeping.
You can spend a few hours visiting rather than doing 3 loads of laundry for Mom alone then trying to get the rest of the laundry done.

Try to remember this is not the Mom that you grew up with, this is not the Mom that picked you up from camp, listened to you when you cried when your first boyfriend broke up with you. This is a Mom that will forget who SHE is, she will forget that she needs help and may fight you tooth and nail when you try to get her to change her clothes, try to get her to take a shower. She will forget how, what and when to eat.

Dementia is a thief. Not only does it destroy the person with the diagnosis but worse it steals the person from the family. Physically they remain. So the family is robbed of years with their loved one. I suppose the one good thing is that the person with dementia for the most part is unaware that they are affected in this manner. They can be happy, the can make friends in Memory Care. Their world becomes smaller but that is easier for them to comprehend.
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My SIL had to make the same decision for her Dad.  It came at the recommendation on Care Givers she had hired to be with Dad for a week that she had to be away.  After a week away from dealing with Dad day to day she realized they were right and he needed to be somewhere that could better care for his needs.  She also had a small child at home and the Care Givers were concerned that he may mistakenly cause injury.  Once Dad settled into the facility it became his home.  We brought him home once a few months later for Christmas dinner and he was lost.  From that day forward we went to him for any celebrations and he was thrilled.
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Well, on balance I think that if you cannot give up your work than you have to face the fact that your Mum needs more care, therefore you need to look for a care home - also maybe your Dad will also begin to fail when he is on his own without his wife to care for. So you probably need to look for some form of assisted living for both of them.
Of course it would benefit both of them to be in a place where they are looked after well, and also they have probably been appreciating how much care you are giving so they would understand how difficult it all is for you!
I think that you are underestimating the communication you already have with both your Mum and your Dad.

Best wishes from the UK!
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MichaelC Sep 2018
Doubt it helps to compare working versus caring for a loved one as it is not a guilt comparision. The question and answer for me was to understand I could not provide the supervision and care my mother (97 years old) needed and the NH could. So I have concluded the best place for her was where she could receive those services that I could not provide.
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I had to do the same for my mom and felt the guilt terribly. I learned to accept it by knowing she was safe. She would go out in the night in pj's, no slippers, in 0 degree weather. Had the alarms on doors, etc., but she was fast. For her safety, it had to be done. Hugs to you for your continued love and care for her.
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After over a decade of my siblings and I caregiving of my parents, we made a decision to place them in a nursing home. They have been there a little over a year, and I know that there are days that we still cannot accept the reality that they are there. We are there almost daily to visit and advocate for them. There have been problems, but the staff is generally open to correcting them. Like another poster stated earlier, there is a lot of oversight and regulation in these facilities.

I went today to visit and found my mother in her room with my sister and brother-in-law visiting. I asked where my father was, and my mother said, “I don’t know, he never tells me anything!” I finally found out that he had gone fishing! Imagine that! They had taken my wheelchair-bound father who has one leg that can’t bend and sticks way out in front of him, along with five other male residents, put them all on the facility bus, with several aides following, down to the Gulf of Mexico to fish off a pier. How great was that!? All these guys have dementia, but they remembered how to fish!
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Elizabeth Angela: It's NOT an easy decision! My mom is 100 and has lived in a NH for almost two years (following a fall, hip fracture and surgery). She is still pretty with it, but needs help with ADLs. On days when she's really good, or when she tells me she's leaving and starts packing, I still question whether this is the best place for her. Take a step back at these times. Could you provide 24/7 care for her? This would mean no life for you. If she gets up in the night, you would be up in the night which means no sleep. You will still be her caregiver; people in NHs need family support even more. If you are exhausted and angry due to being the 24/7 support, you will be no help to her. If she's in a NH, you can visit everyday, keep an eye on her care and really get the best out of your relationship with her. After saying all of this, again, I stress it is NOT easy to accept this. Good luck!
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My 91 year old Mom had heart surgery last week and was put into rehab to regain strength. She has always said she didn’t want to end up in the "poor house". We agreed many years ago that we were not suited to live together and she has always told me that she did not want to have to live with her children the way her mother did.

I was fearing the worst but I did my homework and picked a place with 5/5 stars on all the rating websites.

It has turned out better than I expected. She has settled in and is cooperating with the therapists, although she is not thrilled with the food. This might be a small step is getting her into assisted learning living now that she has had a taste of the how much easier her life can be is she doesn’t insist on doing everything herself!

maybe there is a way you can have your mom stay for a short time, like respite care, to get her familiar with the place, residents, and staff.
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Please tell us more about your Dad?
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I have mentioned several times before that for me SAFETY was the only thing that came into play with a decision to keep my Husband at home or place him.
If it became unsafe for me I would have no potion but to place him. If it became unsafe for him I would have had no option.
As the disease progresses she will need more help, she will need more supervision, she will need equipment to help move her either a Sit to stand then later a Hoyer lift. Both of these have risks. Her trying to get up on her own, an unsteady gait are all safety issues. Is it possible that she may begin to wander? Do you have stairs that she will try to use? Do you have a bathroom that is accessible for someone in a wheelchair? All these things add up.
So think..is what you are doing by placing her going to keep her safe? (Yes things do happen in a facility just as they might happen at home)
Are you placing her for HER or for YOU? I am sure the answer to that is you are doing this for her, not for your benefit.
Rest easy on this decision there are others to loose sleep over.
Just remember every decision you make for her is for her benefit. As long as you can honestly say at the end of the day that you did your best for her that is all you can ask of yourself, that is all she would have asked of you. ( I am sure there were plenty of decisions she made on your behalf when you were young that she worried about, and you turned out just fine)
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Sounds like dad is at the point he needs a little help too. First of all, I'm sure if your mother would not want the rest of her loved ones health to decline or that anyone should have financial difficulties.My parents kept my grandfather at home as long as they could until there was no choice do to his declining health. I'm sure she would understand your choice wasn't easy and you would gladly care for her.Now you guys are at the point of crisis .Remember in case of emergency on a plane they say put your own oxygen mask on first.If you are not healthy and emotionally well your no good to yourself or anyone else.
This being said there are options in most states for a loved one to care for their family member with dementia and be paid .CDPAP programs are covered by most insurance.if you call them they can give you details. If it is beneficial to keep her home at her stage she likely qualifies for NHTD which provides 24 hour care in home. If none of these are an option. For your family please know that you are doing the best for her health and safety.Please line up visitors to be with her as much as they can.She may seem like she is lost in her own world but this interaction will help her and assure you guys that your doing the right thing.
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My mom passed away, less than two weeks ago. For the last year she has been in a memory care facility. I can not tell you how much they did for her and my family. It was a rocky road arriving there, as I am sure you are experiencing, now.
Let go of any guilt and shame, and go be JUST her daughter again.
Blessings
Dusty
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Speaking as a parent, child, grandchild, etc., I can say with absolute conviction that sometimes making the right decision is painful - sometimes excruciatingly so. That said, making a tough decision out of a deep and abiding love, with the wellbeing of your loved one at the center of the decision, is about as unselfish and compassionate as it gets. I have no doubt that you will be vigilant in watching over her care in whatever facility you choose for her, as advised by people in this forum. If by "failing" her, you mean you will ensure she is safe, fed, and given the best care she can possibly get, I think that's a failure I hope to be accused of some day, should the need arise.

We don't get to choose whether or not the people we love suffer with dementia. We do get to choose how we respond to it. And making hard decisions that aren't what our hearts wish we could provide is part of that.

Your mom is blessed to have you - a brave child making the best choice possible even when it hurts.
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cwillie Sep 2018
Very well said. Sometimes there are no good choices so we are left doing the best we can with the hand we've been dealt.
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You can prove it to yourself. Once she is in the home, be annoying. Are her clothes clean, has her weight changed? Pinch her skin, see how well hydrated she is by how loose the skin in. If they are tracking urine output, ask to see the chart.

Make little Sharpie marks on her shirts and socks, see if the staff are actually giving her her own clothes back.

And tip or gift the assistants so they love you and mom. (Work the system, right?)

Two hours a week of travel and being a pain in the butt will help make her care the best it can be and keep your mind at ease.
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I can surely relate to your feelings of guilt. My husband had many health issues and I tried to care for him at home, but he kept falling, thank the Lord he never got any serious injuries. Finally I had to put him in a NH but continued visiting him every day. He would always ask when he could come back home. I would always tell him that his doctors felt he needed to get stronger before he could and that we would have to wait for them to feel that he was. He was only in the NH for two weeks before being rushed to the ER. His nurses found him unresponsive one morning when going to wake him for breakfast. Needless to say, he passed away in the evening, the third day in the hospital. He was always saying that he would never go to a NH, but I tried to make him understand that he needed care 24/7 and I could no longer pull him up from his chair or toilet or bed as I have a bad back. There were so many times that I would get cross with him and it was usually after I had gone several nights with very little sleep and then also taking care of everything else that needed done. Even though he was getting excellent care at the NH, he was so miserable because he, along with other residents had to stay seated in their wheelchairs at the nursing station for hours. They were the residents who were high risk for falls. He had a bad back so the sitting just made the pain worse. Those last few days in the hospital, tests that were done showed that his cancer had come back for the fourth time, after being cancer free for 8 yrs. It was in his lower back and liver. I cry every night from the guilt I have from being cross with him and for putting him in the NH and wish that I had kept him at home where he felt the safest. He made the statement shortly after going to the NH that if that was the way he had to live, he might as well be dead. Even though he was not responsive those last few days, he did still know who I and our two grown children were. I was with him the whole time he was in the hospital and the kids were with him while in the ER and they visited off and on. He also had suffered from Vascular Alz., Parkinson's Disease, diabetes (on insulin), and at the end, cancer. Not a day goes by that I don't miss him terribly and wish that I could go back and change how I sometimes related to him and I would have kept him at home had I know the end was so near for him. I can rest assured because I know he was a Christian and is in heaven, so he no longer suffers. But my guilt remains, after 57 yrs. of marriage, I feel like I have lost a part of my body. I try to stay as busy as possible so that I don't dwell on this but I have a difficult time sleeping and stay up until I am worn out. Last night I started putting some soft music in the CD player and that helped a bit. MY prayers go out to everyone that has gone through the guilt factor.
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MargaretMcKen Sep 2018
Dear Stitchintime, You are not alone in wishing that you had known in advance how quick things were going to be for the end of your husband’s life. If only we had a crystal ball, making those complicated decisions would be so much easier all round. People have the opposite problem as well – taking on an impossible task in the expectation that it won’t last long, and finding themselves stuck in a difficult situation when a different decision in the first place would have been far better for themselves and the person they want to do the best by.

People can feel so bad because they 'didn't get there in time' or because they fell asleep at the end, when they know that it really made very little difference.

Please don’t blame yourself or feel guilty. You aren’t to blame and you aren’t guilty. You can wish that things had been different, but the fact is that they weren’t. Give yourself some peace, and be glad that your husband has found peace as well. You have my sympathy.
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Hi I must admit it was one of the hardest things I’ve ever done. Deep inside I know it’s the best thing I Sound have done for my mom she has been in a home for 1 year now. It still hurts especially when I leave . They have activities and take better care of her than I could. She still remembers me. Just bailly but. I bring cds in of her fav music and she remembers most of the words
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It helps if you think of yourself as a caregiver and her advocate. You are doing this in her best interests and that is exactly the opposite of failing her.
I know there are some on here that have had bad experiences with nursing homes. They are not for everyone. But I worked as a therapist in nursing homes for 20+ years and there are a lot of kind, gentle caring people working in nursing homes. They are also some of the most regulated facilities out there. They have social workers, resident’s rights, resident councils, reviews by different professionals. There are also ombudsmen that can help with problems.
You are succeeding at caring for her if she is safe, cared for around the clock, clean.
Hugs
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My Mom was hallucinating, thought that our house wasn't our house and was getting lost driving as well as driving down the wrong side of the highway. I had a full time job and she was always calling me not knowing what day it was, not knowing what time it was, hearing voices and music.....I was having to leave work constantly to go and get her when she would drive and get lost. Thank goodness I had a tracking app on her phone. It was causing me and my son enormous stress and starting to affect our health and my job.

I was able to get her admitted to the hospital and after a month of observations and drug treatment, they diagnosed Lewy Body Dementia. From there I placed her in an assisted living. It was the hardest thing I've ever done but I knew I would not be able to keep her safe, she would be alone and not eating, and she would have no socialization.

Our relationship has definitely improved and the stress level has gone down. She is not totally happy, she can't have her little dog, but I bring the dog to visit as often as I can. The medication has helped a lot and sometimes I think of bringing her home, but I know that's not the best thing for her and she would not be safe or cared for as well.

I still have guilt, but I know its for the best that she is where she is.

Hugs to you.
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It is never easy, but it became a safety issue for us. My mom has dementia and is in a wheelchair (stroke 16 years ago), was deemed as needing 24 hour care - thinks she can take care of herself, but unable to handle the day to day hygiene, food prep, getting dressed, etc.... She is in a facility with daily activities & she can go to mass daily, yes, she has outbursts where I am the worst daughter in the world, but tell yourself it is the disease talking, not your mom. It still hurts, but in the long run it is the best for all of us. She is dressed, fed, gets her meds & has social activity. Not an option for me either to stay home & care for her, I did it for a while and she did not like me seeing her like that. Do what you can to make her room comfortable, visit often (unless she gets nasty), and try to keep her busy - coloring, puzzles, cards.... I wish you the best.
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It was very hard for me as well, We ended up putting my late mom to the nursing home because she was falling down a lot and she had broken her arm and leg at home after the ER brought her back from the hospital. Even though Mom had dementia, I felt guilty about it, but in the long run, it was better for both of us. However, I didn’t like the nursing home because it was depressing and Mom was lonely.

With my late dad, I ended up hiring an agency to take care of him until he passed. He kept telling me that he didn’t want to go to the nursing home because he remembered that it was depressing when my mom went. He had a mild dementia and he was somewhat alert, but he ended up dying from an advanced lungs cancer.

Take it one step at it time. You will feel relief for your dad’s sake and your mom will have 24/7 care. Just keep letting your mom know that you love her very much and you will be visiting her every day.
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My mother was a severe agoraphobic for my whole life, and suffered from terrible anxiety. No one in my family had ever been in a nursing home, and I was certain that if I placed her, at age 89, she’d be gone in 6 months.
Instead, she led a happier life during her last 5 1/2 years in that nursing home than she’d lived for the almost 3 decades before, and died at 95.
Prior to placement, I’d slept on the floor beside her bed for months, because she’d attempt to get out of bed and was a constant severe fall risk. She’d already broken her hip, and was probably in moderate dementia.
I visited every day at supper hour, and her 2 younger sisters visited at lunchtime. I grew to love her caregivers, and remain in touch with some of them to this day, over 10 years after she died.
As long as you are comfortable with the facility, your observations of her care will gradually allow you to relax with the knowledge that her caregivers there are available 24/7 to give her the care that you know she needs.
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Dear Elizabeth - If only you could read my recent posts and know what it means to care for a person with advanced dementia - you would know that you are doing the right thing. This is a progressive disease and it will rob your LO of her mind and her senses. And if you choose to care for her, it may well do the same to you. Please don't feel guilty. You have made a wise decision. She will have trained caregivers that have the ability to leave, and come back refreshed, to give her the best of care. If she were to stay with you, you would not only lose your freedom, your world would change and the 24/7 responsibility of caring for and watching your Mother deteriorate, would break your heart. This is the voice of experience talking. I love my Mother dearly, but caring for her has aged me and frankly there are days I am absolutely fried. Do your homework and find a reputable place for her. Then you can spend quality time with her knowing she is receiving the best of care. God bless you and comfort you with peace.
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I too felt like a total failure when I realized I couldn't do it anymore, you just need to keep advocating for her and take it one day at a time, and don't allow yourself to get overly focused on any small issues that make you doubt your choice.
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You can still be super close to your Mom, even at a NH. I am an only child, mom was divorced, and it was just the 2 of us for years until I got married, and he loves her too. I visit her daily, I have become her advocate, where she was always mine. She has dementia, is now blind and has some medical issues, and I am not trained in any of this. She is getting much better care than could have given her, and although I miss her when I’m not with her, I have to say I have never been closer to her. You are doing this from love.
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dlpandjep Sep 2018
What a beautiful, compassionate post! Bless you!
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