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I decided to ave my mom in a home almost 5 yrs ago. It wasnt just my decision, my sister wanted the same. Now my mom is getting much much worse. She has dementia. She may pass soon as she no longer gets out of bed. I am having to extreme regret and guilt that I did not bring my mom into my home. I feel very strongly that I made the wrong decision, that I could have cared for her with some help. I feel I didn't even try.

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Maybe you could have cared for her with some help. Maybe.

But her dementia would have continued to get worse. She would now be at the point of not getting out of bed. This disease progresses on its own timetable. So far we have nothing to change its course. How we treat our loved ones, the kind of care they get, where they are getting the care, can make a difference in their day-to-day quality of life. It does not make a difference in the long-term outcome. Dementia marches to its own drummer.

So if your mom was reasonably content in the home and was getting good care, then probably you and your sister made the right decision. You did what you could to ensure the quality of her life. And that is all you can do.

If you feel she might pass soon, something you can do toward the quality of her life is have her evaluated for hospice care. And visit her very often during this phase of her life. You can't go back and change the decision from five years ago (and it might not even need changing), but you can do your best now. Don't let your regrets get in the way of continuing to do your best.
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Thank you jeanniegibbs. I appreciate your comments and wisdom. Today I spoke with a social worker and Im going to get 6 free sessions of counseling for caregivers. Im so grateful because I need to change the way I think or I won't get well. I appreciate your comments so much.
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Nora, I hope the counseling helps! Come back and let us know how you are doing.
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Nora, had you taken your mother into your home, it would have likely been up until the time when the dementia is worsening, which seems to be now. Then you would be faced with the difficult decision of whether to attempt to provide care in a situation well beyond the capacity for one individual, or even with your sister, vs. finding a facility placement.

I think it would have been harder had you cared for her so long and then had to make the decision.

IMHO, you could look back and realize that you made a good decision then which has provided your mother with care she needs for the advancing dementia.

It's hard to be objective, though, about facility placements. We feel a need and obligation to care for our parents as long and to the extent possible, but the difficulty is that sometimes that's just not possible.

Was your mother well cared for during these past years? Were her medical and emotional needs addressed? Was she in a good home? If yes, then your decision was a good one.

Honestly, I don't mean to be discouraging but I think these kinds of dilemmas are long lasting and aren't easy to resolve, so don't be too hard on yourself.

You could just sit down and make a checklist of the advantages of having been in a home vs. being cared for by you.

But I think the overall consideration is this: you state that you " could have cared for her with some help. I feel I didn't even try. " That tells me that you weren't prepared emotionally, and perhaps financially and physically, to undertake her care.

In that situation, you did make a good decision to get her the care she needed in a home. If you had taken her but weren't prepared and didn't want to do it, more than likely you would face some of the resentment faced by a lot of other people who post here - full of anger and hostility toward their parent. That would have been worse than a facility placement, wouldn't it?
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Nora, I understand that you have guilt but providing your Mom with a safe, clean place to live is another way of loving her. My Dad felt badly after placing my Mom, who had Alzheimer's, we encouraged our Dad that just because he wasn't "hands on" he was still exhibiting his love for Mom by making sure she was taken care of.
Take care Nora... you did good by your Mom.
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Thank you garden artist and Bethanderson. I'm telling myself that I can't go back and that I did the best I could at the time. Still it's wonderful to hear your supportive reasoning. I don't think clearly when I'm feeling so low. I knew nothing about caring for my mom when she got so ill and I know so much more now. It was a long difficult road. As Im sure it is for everyone who goes through this. I love my mom and Ive never stopped visiting and caring for her in the NH. It's hard to go there, it's hard to accept she's going to die there. I think those are the two reasons I wish she were in my home. It's not a bad place, it's just not the care I would provide....but I can't provide it. Only in my heart. It's not reality. Thank you all so much. Life has so many realitys to face. Tough.
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Nora, these are long and unusual journeys that caregivers undertake. There's no itinerary, no planned or scheduled stops, no idea what will be encountered, and no idea how or where the journey ends, beyond the end of life itself.

Your mother may die there, but you can be with her.
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You are doing the best you can do, and your mom appreciates it, even if she cannot verbalize it now. Some day she will definitley pass away. My mom died in late June, I miss her every day. She did not have dementia, but my dad did and when he died awhile back I was actually quite relieved. It was hard to visit dad and see that his physical body held some bare vestige of his former self....I whispered in his ear every visit, my prayer that he could go to Heaven whenever he was ready. It actually took him a long, long time to leave us. It was so incredibly hard on mom. ...an d probably me too, but mostly I tried to support mom. Then I increasingly had to watch over mom and suddenly she was gone too. Now I just have cleaning and coordinating workers coming to her house to get it ready for sale. It is very lonely. Some day my own 3 kids will be dealing with my death.
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Garden artist you are right and I pray I will be right by my mother until her last moment I just hope I can do it because I'm such a big baby. I cry and suffer such heartache over things and death is not easy for me. Malloryg8r your story is so sad. I know your mom had a lot of sadness over your dads dementia because it's a sad disease. I know the lonely feeling of selling your moms home. My moms little mobile home had to be sold when she went to the NH. It's really really hard. I don't have any children who will have to deal with my death....I actually feel relieved about it. Life is very hard. To me...all we have that helps is eachother to talk to, on this website, our friends, family, neighbors. I love people so I look for friends everywhere to talk to. It helps. Thank you all of you, I never feel alone when I visit this site.
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Nora I understand perfectly how you feel. My Mom died in May of this year. I so often think back over the last two years of her life which were the hardest. It seems like one day she was fine and then suddenly she declined rapidly. I had been her sole source of help and when I tried to get family involved they just looked to me to make all the decisions about everything. So when my Mom was unhappy I felt to blame even though I prayed about every decision I made and even though my Mom always told me she was fine with everything I could see the sadness on her face.

So I know about guilt and all I can say is that we make decisions that at the time seem right and second guessing is a complete waste of time. I know my Mom knew I loved her and I am sure your Mom knows you love her too. Try not to beat yourself up. Its hard but its a waste of time. Just keep loving her.
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Thank you Getshun, you do know. I'm sorry for the loss of your mother. It's a painful experience to make the decisions we did. Today my mom is back on morphine and I'm sure she will stop eating again. Her quality of life is so poor that I have to accept that not eating is not as bad a the pain and anxiety she has when not on morphine. The past 2 years she has been declining but she just declined rapidly the last month. It's heartbreaking in every way. I will do as you say and keep loving her and visiting her bedside. God please take my mom to heaven. I pray every day.
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