Dying parent-My Mom

rob333 (zone 7a)

She's merely nursing-home bound. We're headed for the last step, since it's what she has prepared for: Medicaid. She's not understood who she is, what's going on, or why she's there, for years. She doesn't know how much time has passed and, almost, who we are. I'm having a hard time. How did you deal with it? She really doesn't care. I totally do. Thoughts? It hurts my soul.

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glenda_al


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yeonassky

I'm so sorry you are going through this. I have not personally had this kind of a situation but I wanted to give you hugs.

It is horrible when an illness makes a person a stranger to themselves and everyone else becomes a stranger to them as well. They must feel frightened and off-kilter all of the time. So sorry you and your mom are having to live with this.

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nickel_kg

One day at a time.

You're a good daughter, and your mother loves you, nothing will stop that love.

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maifleur03

Is it that she does not know anything or is it that she will be moving to a nursing home on Medicaid? I wish I could make the hurt go away but remember that you have done the best that you could for her.

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bpath reads banned books too

My mom has been in memory care for two years now. I deal with it by being her daughter. Her caregivers take care of her, I love her. In "normal" times I come for lunch, take her to the music activities, have coffee and a cookie with her, go for a stroll. Now, it's the occasional Zoom.

I'm her daughter. Her caregivers give good care. I trust them. It's what lets me be her daughter. If your mother is in a place you trust, you are a good daughter and a good human. As your mom raised you to be.

((((Rob333))))

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lsnel

I can relate so well to what you are dealing with. It took me along time to realize that my mother (going through the same thing as yours) was getting the best care by professionals and by accepting it I began to realize that by trying to be the perfect daughter trying to do my best isn’t the best idea after all, as having care for your loved one gives YOU the advantage to spend quality time with her without the stress that is there constantly having to take care of her needs. It is so hard watching a parent go thru this. Sadly I lost my dear Mother two nights ago to this horrid Covid, but I do have comfort in knowing that I have many happy memories to last me a lifetime. Take care of yourself first as that I know she would want.

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maifleur03

May your Mother be at peace, Isnel.

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patriciae_gw

I am so sorry you are going through this. I haven't gone through this personally but have known those who have. Would it help to think your mother is more or less already gone? Its a loving duty to care for the shell that is left but you cant say she doesn't care what happens to her because she is not able to care. I would try to remember for her. My family has a habit of exercising our family memories. We have always done that. It brings back what was and makes it is. Some are painful stories and some are fun. We share them with each other. It keeps us all present though my parents are gone.

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georgysmom2

We went through this with my MIL. She was more like a mother to me and it was very difficult and very sad when she no longer knew who I was. DH could take her back to his childhood years for a while and there would be some moments of recognition. I would just sit and listen. I think it's the most difficult way to deal with the end of life for the family members because it ends years before it ends. I remember a friend of mine whose husband had Alzheimer for many years. When he finally passed and people offered their condolences, she just smiled and said :Norm: died seven years ago. The best advice I can give is acceptance.

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sealavender

Hugs.


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Annie Deighnaugh

My Mom went through this with her Father whom she cared for for years before he passed, keeping her promise to him that he would die at home. He did when he was 99. The way she looked at it was that she'd lost her Father long before the shell that carried his spirit expired. She used to say that it was watching him die by millimeters, losing him so slowly.

I'm so sorry you're going through this. The thing is there is no easy way to lose a parent, especially a mother. We don't have a choice, but just have to take it as it comes and deal with it as best we can.

I found meditation to be especially helpful for coping with my grief and loss and expressing those deep feelings as a way of gently releasing them. There are guided meditations for grief and healing that you may find useful. I like the ones as Meditation Oasis.

Sending you thoughts of healing, strength and courage as you go through this difficult time.


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eld6161

Sending caring thoughts to you. We are here for you.

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schoolhouse_gwagain

Thinking of you.

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sableincal

My heart hurts for you, Rob. Few things are harder for a child than to see one's parents (one, or both, in my case) lose comprehension of everything, along with the ability to express themselves. My father's loss of all knowledge and communicative ability was due to a brain tumor; my mother's occurred due to a catastrophic stroke. It was beyond painful to watch this happen. I discovered with my mother that she well remembered the songs she loved, especially the hymns, so I would start singing and she would chime in, becoming very smiley and happy, and so we would go through some of her repertoire, from "Sweet Violets" to "Jesus Saves", and that would make her cheerful even when she didn't know who I was or where she was.

But it is still very, very difficult. But they did what was necessary for us as children and now we do what is necessary for them.

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nicole___

(((Rob))) We're here for you. Your enduring, kind and caring manner for your mother, speaks volumes of "love".

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lindaohnowga

Big hugs for you

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Uptown Gal

Wish I had those magic words that would calm your heart...but I do know what

you are going through, and I am just so sorry you have to deal with it. Sending

a prayer for coping and hopefully comfort and, of course, a big hug.

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Kathsgrdn

I'm sorry. It's hard, harder during this time if you aren't able to see her. (((Hugs)))

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ritaweeda

I'm sorry for what you are going through. I've watched both parents go with cancer but they still had their faculties. I don't think anyone really knows what goes through someone's mind who is mentally incapacitated but I've often wondered if they are better off not knowing what's going on in reality. The loved ones are the ones who have to carry the load of sadness and responsibility. I also had to take responsibility for my Grandmother who in the end was physically and mentally totally incapacitated. I always felt guilty about the fact that she passed away in a nursing home in the end after falling and breaking her hip. She just didn't have the capacity to recover. We do what we have to do to make sure they are cared for, whether it's in a facility, at home or in hospice. Not many of us can take over nursing duties. And there's no way the average person can pay the cost of care for very long. The guilt of turning care over to the Medicaid system is enormous but unfortunately has to happen in most cases. Just try to do your best and don't let the guilt-trips settle in by any means. In the cases where the mind has gone all we can do is hope that they are in a better place wherever they are. Again, I'm very sorry.

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yeonassky

((((((Isnel))))))

So sorry about your mother. I'm glad that you have happy memories to help you.

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Cherryfizz

Rob, my heart goes out to you and your Mom. Unfortunately this is a passage of life we all have to go through, losing our Moms and Dads and no matter how old we get we still wish they were around.

Here is a bit of my story. We had a nursing home at the end of my street and for years when my Mom would walk by it she would say "please never put me in there" as she watched the poor souls staring out the front windows. We all promised her we wouldn't. My Mom eventually developed Alzheimer's and for a few years would be okay on her own, It was eventually decided by my sisters I would be the one who had to care for my Mom because one was working in Saudia Arabia and the other had health issues and no way the brothers could do it because they all had families. I took care of Mom at home for 24 hours a day every day for 10 years as my Mom slowly disappeared and the Mom I knew was gone. She would stare in the mirror slowly shaking her head wondering who was looking back at her. It was hard work. I learned to cope, learned new skills and came up with ;some pretty neat tricks to keep laughter and joy in my life during this difficult time. Some days were pretty comical. My Mom had stopped talking years earlier and it was a great effort to get anything out of her but she would surprise me and every night when I tucked her in I would sing familiar songs to her and she would sing the last few words of every chorus and once in a while throw out an I love you which she never said to us even when she didn't have Alzheimer's. As was said by Nickel above - one day at a time.

Taking care of my Mom was the hardest thing I ever did. I would send Mom to Alzheimer's Day Away so I could get some sleep (she was a wanderer). I didn't have any help until the last year after she was diagnosed with cancer and then I had health and support workers come into the house everyday to give me some respite and to bath, wash her hair, etc. She was 80 years old and it was decided by the doctors that we would just keep her comfortable at home until she passed away which she did a few months later surrounded by family.

I didn't have any regrets taking care of my Mom at the time but years later I had big regrets. I gave up so much to take care of her. I would tell anyone now, don't do what I did. Nursing homes are so much better now (despite the Covid19 outbreak in homes) I am pretty sure my Mom wouldn't have known the difference and may well have enjoyed being around more people. My life would have definetly been different had I put her in the home then. In those 10 years I could have gotten married, started a family, etc. So I do have those regrets. I know this will be hard for you but in the end putting her in the home will be better for both of you. You know she will be taken care of and she will have the joy of seeing you come to visit her. You may think she doesn't know anything but when she sees your face she will know that you belong to her.

Just know we are here for you. The KT was my go to place looking for support and someone to talk to at the time. Hugs

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sweet_betsy No AL Z7

Wishing you peace, comfort and love on this sad journey.

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Cherryfizz

lsnel, I am so sorry for your loss. You have my deepest sympathy.

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OutsidePlaying

I’m so sorry, rob, tha you are having to go through this journey with your Mom. Please know you have friends here who will lift you up and let you vent any time. Many have walked in your shoes as you can see. Sending you virtual hugs and prayers for serenity to carry on.

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hounds_x_two

Just sending more caring hugs your way.

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Alisande

Rob, have you been taking care of her up to this point? I hope you're not feeling any guilt about making this decision. It's so difficult. I promised my husband I would never put him in a nursing home, but after caring for him at home for seven years I was convinced by his doctor and my daughter that this was something I had to do. They were right.

He was there for three years before he died, and many times during that period I told myself that when it was all over and I looked back, I should remember you did the best you could at the time. It turned out to be good advice to myself, and now I'm passing it along to you.

Another thing: Even if your mom doesn't seem to know who you are, it's very likely your voice will comfort her. Depending on her condition, the same might be true of your touch.

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Jasdip

Oh Rob, I'm so very very sorry. I have tears in my eyes knowing what you're going through. It's has to be the most heart-breaking thing in the world knowing that your mom doesn't know you. That isn't your mom as you knew her.

But perhaps she does recognize your voice, as Alisande mentioned, so take some comfort in that.

((((ROB)))))

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Michele

Rob, I’m my mom’s caregiver, for about 10 years now. She’s 91 and legally blind. She’s not as sharp as she was, so I worry about the future. I don’t think I’d be capable of dealing with any additional issues.

I go along with all that’s been said. People care. You’re obviously a loving and caring daughter. Be good to yourself too. You’ve done right by your mom.

Isnel, I’m sorry for your loss. I hope you find comfort somehow and the strength to get through this painful time.

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marilyn_c

I went through this with my mom. My heart goes out to you. I wanted to keep her at home. I had promised her I would. She was in perfect health, but she fell and hit her head. She had 2 blood clots on the brain. They removed them but she was never the same. She declined mentally very rapidly. At the time my daughter was 8 years old and I felt my first obligation was to her. Because my mother was in her 40's when I was born, my sibs were old too by the time she needed a nursing home. All responsibility was mine. They seldom visited her in the 6 1/2 yrs she was in the home. My brother visited 6 times, my sister twice, and my other brother in Indiana, not at all. My husband or I was there almost every day. It was a horribly stressful time. She was 94 when she died. My sibs said they didn't visit because she didn't know who they were. I said, "Yes, but you know who she is!" I swore I wouldn't tell them when she died, but I did.

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Fun2BHere

My heart breaks for all of you are dealing or have dealt with this. I know I will be facing the same issues in a few short years, so it is helpful to hear what you've done and how you've felt about your choices afterwards. Thank you all so very much for sharing. I wish you peace and goodwill.

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Elmer J Fudd

I'm sorry rob. Best wishes for both of you.

Maybe you'd benefit from speaking to a counselor? I hope you have access to such services, give it a try.

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DawnInCal

I'm sorry, Rob.

It's terribly sad and difficult to watch loved ones, who were once so capable, decline and become unable to care for themselves. Take one day at a time, know that you are doing the best you can and don't forget to take care of yourself.

Isnel, I'm sorry for your loss and that your family has been personally affected by the horrible Covid virus.

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rob333 (zone 7a)

Thank you all. Each step is harder. Even though I know what we are doing and cannot do anything differently. I never thought it'd be this hard even though I've done it with grandparents and my mother in law. This time is so different even though I was also close with them

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phoggie

Sending you many hugs, Rob 🤗🙏🏼 I too went through this with my mother and it was so hard on her and our family. Her dementia lasted for over 25 years and she lived to be 90 years of age...but I felt she died many years before. The day we had to put her in a facility was heart-breaking but had to be done because she wandered all night.

Her mind was in the past as a child, until a stroke took away her speech and ability to walk.... so if that is the case with your mom, go there with her...agree with her...let her be right, even if she isn’t. I always took my curling rod, fingernail polish, and makeup when I went to visit her and told her she was beautiful and I could tell by her little one-sided grin, she was happy for at least a moment.

I could not be sad for her at her funeral because I knew at last, she had a good mind and body again...and although my heart was breaking for myself, I was happy for her.

Blessings to you as you go through this difficult time.

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blfenton

My mom is in a marvelous care facility for Alzheimers and I know that during this time they have become her family and that gives me peace. I know that if something does happen to her she will be hugged and her hand will be held until the end.

My mom hasn't known who I am for over a year. I knew it was coming and I accepted it as it happened. I have to be pragmatic about it. I can't dwell on it. After all, who are you going to get mad at - yourself, your mom, the disease? It doesn't solve anything.

What I don't like is when people say that your mom isn't your mom anymore, or she as been gone for a couple of years now, that isn't true. My mom can still smile at the caregivers, she still can have a sparkle in her eye, she still enjoys a bowl of chocolate ice cream, she likes having a foot rub.

I have to find the good parts because if I dwell on the bad parts I feel bad for her, not for me. I know she would rather be hiking or golfing than sitting in a wheelchair as a result of breaking her hip in March, I know she would rather be playing bridge than folding and refolding and refolding her lunch napkin, I know she would rather be singing in her choir than watching choral music on TV but words have now failed her.

@rob333 - It's hard, I know. Can I ask - How do you know she doesn't care?

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WalnutCreek Zone 7b/8a

I am so sorry, Rob333. This is such a hard, hard thing to go through. Many years ago, my brother, sister, and I went to visit Mom (all of us lived quite some distance from where she lived). When we arrived, we were shocked to find all of the doors and windows open and Mom passed out in a bedroom on the bed. Scared us senseless. She was a brittle diabetic and we have no idea how long she had been passed out. Once we had seen that she was taken care of, we three decided she could no longer continue to live alone. We met with Mom and she agreed. We all thought she would choose to live with my brother, because he was the baby and her favorite. What a shock to us when she said she wanted to come live with me. In hind sight we believe she made that decision because my brother and sister both had fairly young families at home and I lived alone. Regardless, I was happy to have her move in with me. We had lots of fun for a few years, then things started changing. One time I thought she was going to attack me with a butcher's knife; she was angry with me for some reason and came at me with the knife pointed towards me. After I was able to calm her down, bathed her, got her comfy and in bed, I took all of the knives and put them where she could not get to them. She really scared me, and that was definitely not my Mom who did that.

When she became a wanderer, my brother and sister and I (it was necessary for all of us to work) made the decision, as much as we regretted doing it, that she had to go to a place where she could get care and be watched and kept safe from herself. It was the hardest thing we ever did; we all cried and cried. By the time we found a place for her that was acceptable to us, she had deteriorated even further. She started cursing (our Mom did not even know and had never spoken a curse word in her entire life), became combative, actually even escaped from the nursing facility a few times by being very clever. Thank God, they always discovered her missing immediately and located her and were very sweet with her and got her back to the facility.

I will stop now. I am just taking a long time to say what others have said, that my Mom was gone. She no longer knew who anyone was in the family. I visited her the most often (nearly every day or evening). Because my brother and sister lived quite a distance away, they did not get to visit too often, but did so whenever it was possible for them. All of her grandchildren visited her to and were all so hurt when she did not even now who they were.

So take heart and know that you have done all that was possible and now it is no longer possible. For the safety of your Mom, you have to let her go live in another place.

I apologize if this is too long, rambling, and I don't know what. I just want you to not place any blame on yourself. It is hard not to do so, but don't do it.

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hallngarden

Rob, I pray for you peace. Reading all the post , they all were my situation. A lady that drove ,cut three acres of grass each week, faithful Christian lady , mind sharp as a 20 year old until she was 92. She was very smart and kind. Slowly her brilliant brain became cloudy. My husband and I took care of her for years. We were hoping so much to be able to allow her to stay at home until her final day. I am a small person to begin , my weight was dropping below a hundred pounds. We came to the realization that hubby and I both were losing our health. Hardest drive of my life taking her to the nursing home. Some days she thought I was a nurse, it was so sad seeing a very strong mind fading. Mother lived another year and a half after nursing home. When it was near the end they let me move into her room and stay with her until the end. One of her nurses there knew her when she was vibrant at 92 years old. So if I was away she was there taking care of her. We had the most fun funeral ever. We knew she was in Heaven when she took her last breath. Oh how I still miss Mother and Daddy, we are now in our eighties and our grands are only 11 and 10. I have to realize someday my husband and I will leave our grands and kids. The road gets rough near the end, but the Sun still shines. You will have the strength to get thru a very trying time.

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marylmi

So sorry you you are going through this and so sorry your mother is too. I have been there too with my husband and while it is hard, we just have to take one day at a time and be there for however much time as they have left. "Hugs"

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maifleur03

cherryfizz touched on something that few think about with their loved ones who live at home. They normally only have interaction with a few people. Think of how this stay at home has changed your mood if you have been staying away from your normal activities. Older people/most people need interactions with others. Sometimes like one of my husband's aunts who moved from living by herself to a assisted living/nursing home simply being around others has made her happier.

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jim_1 (Zone 9A)

Robin,

My thoughts come from working in a 243-bed nursing home for several years. Not as a health care provider, but an office person.

Tough times for you. We know that and we hope that your sleep patterns even out in the coming months. I hope that your son is involved with this process, as he will become part of the process in the coming months.

It might sound trite, but suck up to the nurses and CNAs who will provide her care. I might sound bad, but they will know that you know that the providers can make a big difference in the day-to-day care and activities. Home-made goodies are welcome and it gives you an opportunity to redirect your anxieties about this.

I found it amazing how many long-term dementia residents changed, enjoying coloring books or singing songs that might not have been a part of their lives in the recent past. Make sure that some sort of exerciser are offered, not required!

Find out when the nurse practitioner or doctor will be in the building and making the appropriate rounds (not always an easy thing to figure out). If you can, be there to chat with that person and express any concerns you have. If you cannot be there, then leave a piece of paper with no more than 4 questions or concerns and leave space for the appropriate answers.

There are probably folks in the social services area of the facility who you can spend some time with. Clarify the procedures and all of that.

And...let us know how things are going.

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wildchild2x2

I'm sorry you are having to go through this. It's difficult enough without the dementia or Alzheimer's thrown into the mix.

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jupidupi

My mom was super healthy, a yoga teacher, and while Alzheimer's dissolved her brain, her body kept going for 12 long years, with the last four spent in a memory care center. People would ask me if Mom still knew who I was. What they didn't understand was, it didn't matter. What mattered was whether or not she was having a good day. And the singing thing is worth a try. He's Got The Whole World In His Hands is a good song, because you can work her name into it and point to other people and name them, plus clapping along is fun.

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hallngarden

Great point, I had forgotten that Mother would start singing. She knew every song verse in our Baptist hymnals. Also her bible verses, she would repeat chapters that she had known since a child. Strange how the brain will remember certain items. When she was dying I was writing down everything she was saying, it was on Christmas Day and she was telling me she was going to celebrate Jesus birthday. Last thing she said to me was I love you.

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Marilyn_Sue

I am so sorry to hear about your Mother. Hugs and prayers.

Sue

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happy2b…gw

I am so sorry that so many are coping with the decline of a parent.

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adellabedella_usa

I'm sorry you are going through this.


I'm reading through all of the stories here. Everyone has their own unique situation. It helps to know what others have done or are doing.

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sylviatexas1

I am so sorry. I think the simple things are the best. Hold her in your arms, brush her hair, tell her you love her, sing the old hymns.

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caflowerluver

So sorry that you have to go through this. It is hard I know, having gone through it with older relatives like an aunt and MIL. The saddest was my SIL who gradually declined from Frontotemporal Dementia for over 5 years and died at only 62. It was a blow to the whole family.

lsnel - I am so sorry for your loss.

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sleeperblues

I'm so sorry, Rob. Having gone through this 3 years ago, it's still raw. I'm sending you strength to get through this tough time.

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rob333 (zone 7a)

I know she's ok with it as she has been content to sit at stare at the television for the past few years, and will still do that even when we're visiting. Don't get me wrong, she's happy to see us, just watching TV. I wish she could/would change the channel. She doesn't know how and they don't do it; she settles for whatever is on. She likes the workers and will introduce them to me when I visit. That's always been her thing, PEOPLE. Therefore, I know she's ok with it.


They called to say she's down to 116 and goes to weekly weighing. She's got to be a size zero now. I know because when I was 116 that's what I wore and everyone told me I was too small. And I was.


My biggest hope is when she goes to the next facility in a couple of months, she'll go back to eating. She loved their food.


I haven't stopped to read everything you wrote, but I will. It'll take me time. I want to digest it a little at a time..


Thank you all

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hallngarden

Rob, you are doing the right thing for your Mother. First, I thank you for giving me the opportunity to express my feeling when posting earlier. It hurt so bad in my heart as to decision for my Mother in nursing home. Bottom line I wanted the time of Mother being active and sound mind. We are now in our eighties and our children may have decisions down the road if we lose our health. You will make all the right decisions, trust your heart. From reading all the postings, we all were faced with same scenario. Know we care. Love will get you thru this time. Your Mother will feel the love.

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maifleur03

robb it may not be that your mother does not like the food. She may be at the stage that many with dementia get to. The brain no longer allows the person to swallow so while it looks like the appetite is failing it is the mechanisms that tell the person to swallow or signals that they have eaten too much after only a few mouthfuls or it becomes difficult and perhaps painful to swallow. Drawing food into the lungs at this stage is what often happens leading to pneumonia. I was told this in Alzheimer's group and that was what happened with my husband. I could have had a feeding tube installed but they have to be removed and cleaned frequently and really does the loved one no good. Since we had talked about this I opted to tell staff not to insist he eat if he did not want to.

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rob333 (zone 7a)

maifleur,

That's more probable than you know. She was in ICU, last year with septic pneumonia due to aspiration.

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maifleur03

The Alzheimer's group I was in demanded that we be told what to expect after the original group was split. We were tired of the lack of answers as to what to expect. Once it was clear that real answers were wanted and would be given people actually started exploring what they should expect. Some did not even know that as the various types of dementia, we had several in the group, they might have to change diapers. I was glad for the honest discussion about the changes that could happen. It helped to know what and why the staff was doing what they did.

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sjerin

Rob, you have done and are doing your mother proud. If she could, I'm sure she would tell you how much she appreciates all the emotion and effort you have put in to make sure she's being properly cared for.

You'd be surprised at how little one can eat at that age, and still continue to live! Don't worry too much about how much is getting in and how much she weighs. My mom got down to being an extremely tiny person (she was bed-ridden so we don't know how much she weighed,) and ate next to nothing, and then nothing for quite some time.

You have done your very best for her and she feels your love, whether she shows it or not!

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Housekeeping Get the Family to Pitch In: A Mom’s Advice on Chores
Foster teamwork and a sense of ownership about housekeeping to lighten your load and even boost togetherness
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Life Show Us Your Mom’s Influence on Your Home
Maybe it’s a great chess set or a style philosophy. With Mother’s Day nearing, where do you see your mom in your space?
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Room of the Day Room of the Day: Mom’s Master Suite Takes On a New Global Style
A mother of 2 remakes her Manhattan bedroom and bath with inspiration and items from Morocco, Turkey, India and Afghanistan
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