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Dear AC Forum,

My mom is 96, dementia, CHF, pacemaker dependent. Today she is sleeping all day, has a hard time staying awake for much, she uses a walker and walks very slowly but says she can't do that today and is very adamant about it. She usually is cold, but today is not. She looks puffy. I should give her a lasix. The doc took it away and said use as needed. Her feet aren't puffy, but the rest of her looks that way.

I have a stomach full of butterflies, feeling nervous and unsettled. I don't do this part of life well at all. A million thoughts go through my mind. I first beat myself up for not doing better, though I think I've done as good as I could knowing the least about caregiving and what to do for the elderly in this situation and coming into it absolutely with no knowledge and learning along the way. I've tried to maintain my life, but that hasn't happened, as my mom has always come first. Part of me says I could have done better, but that's probably because I was brought up with my parents saying, "you can always do better." So your best was never good enough. Makes one an over achiever and never satisfied unless the job is perfect - hence also hard to take any criticism because I've always laid myself out there.

Part of me is glad I could keep her out of a NH and give her some dignity after what she went through before she got to our house.

And a bigger part of me is afraid of losing her and knowing I'll be without my best friend for the rest of my life. In spite of not having that kind of a relationship for several years. So part of me is mourning loss already.

I don't know how to feel or what to do.

If you care to share your story or thoughts, please do. Though, please don't rake me over the coals, I can do a good job of that myself.

Thank you,
LastOne

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I don't think there was anything wrong or offensive in Babalou's question. A large majority of the people who care for the elderly at home plan to keep them there till the end. Your choice is different, no reason to slam Babalou. I have been involved with the purchase of many houses and I can guarantee that no realtor would know the answer to the question if someone died of old age in a home.
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Today seems to be the day that my thoughts come in segmented spurts, stopping after I post then resuming a few moments later.

You wrote of the dilemma of not knowing what to do, of the possibility that these days are the last.

A cyberfriend once gave me some excellent advice when my sister was dying but I was in denial. She suggested treating every day, every visit, as if it was in fact the last. I would say what you wanted to express to your mother as these thoughts and desires occur, about her being your best friend, about other positive things in your relationship and lives.

I always thought that was good advice - say it now and don't wait. None of us ever really knows when that last moment will come. I wish I had had that advice when my mother died, although she showed no signs whatsoever.
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LastOne, you sound like a very loving daughter. I do wonder why you have fears of not doing a good job. It sounds like you are very attentive. I do have sympathy for you as your mom's condition declines. At 96 years, she has lived a long life. I would try to remind myself of this. Still, I bet the pain is incredible. I do hope you can find comfort in some things.

Plus, she's home with family. That's pretty incredible. Others must admire you for your what you've done. I would try to focus on what I know and that I did the right thing in my mind. Then try to find peace with that. Reading comments on sites like this is helpful, IMO. Private counseling or church services helps others. Take care of yourself.
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Hi Lastone. I too took care of my mom at home until she passed. I had a doctor whose sole practice was the homebound. If I felt someone was off, I did not hesitate to call and she would send a nurse from the local visiting nurse association. If you are still taking your mom out to doctors visits, I would not hesitate to call. That doctor can set you up with a few nursing visits. First I want to commend you on the wonderful job that you and your husband are doing taking care of mom. This is probably the hardest "job" you have ever had but let me add it will be the most rewarding. You know your mom the best, you are with her everyday. If you feel something is not right, call the doctor, you are your mom's advocate. In my opinion, I really didn't care if the doc thought I was crazy or a pain in the a**. This was my mom, I would go to hell and back for her.
There is no right or wrong way to feel. But do not ever think you did not do your best and I am sure you made each and every decision with live in your heart. That is all that matters. I can tell you how it was with my mom. My mom could barely stand to move her from bed to wheelchair, to stairchair, to potty to recliner. Although she was very advanced in her dementia and parkinsons she ultimately died from a brain bleed from an old aneurysm. One day she told us she was tired and didn't want to get out of bed, but she did eat a little. Next day hardly any food, still in bed. Her pulse ox (we had one at home) was in the
80's. Monday we took her to the ER, told about the brain bleed and in 48 hours had hospuce set up and brought her home. She lasted a little over 2 weeks. She slept most of the day, had moments of awareness. Slowly her urine decreased and i could no longer get any pulse ox readings. Her passing was the most beautiful and peaceful I have ever seen. It was what I had prayed for. I never left her side the entire time. Honestly I felt relief that my mom was no longer suffering. In my head she was in heaven with her sisters, walking, talking and dancing. I was heartbroken that my mom was gone but have come to realize rhat she is with me everyday. On the day she died i told her if I ever had the chance to see the Ling Island Medium that she better come thru. This was one if the shows we watched together. I miss and think of my mom everyday but know she is in a better place with our Lord. Sorry I was so long and I hope this help you in some small way. P.s. If offered hospice, take it immediately, these are a wonderful group of people that are available to help your mom and you and your family. Wishing you peace and comfort. 😇🙏
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It won't hurt to ask her MD to send a visiting nurse to check on her. It won't hurt to check her heart rate, BP, O2 levels at home with simple equipment from a drugstore. I know being able to check these often made me feel better.
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LastOne, is your mom on Hospice? What has the doctor said about her condition and any expectations? Maybe, if you had some help in the house, you might not feel so nervous.
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Lasting, you need help and you need it now. I have zero experience but I think some nursing homes will provide respite care for a few weeks. If the funds are available i would definitely do that to allow you and your husband to get some rest and to find a permanent place for mom. No one will be sitting at moms beside 24/7 unless you hire a private duty nurse. The care you are giving your mother now will not be the same in a nursing home from what I have experienced. Good luck and try and get yourself some immediate help.
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LastOne, I fully understand you not wanting her to die at home. When she is close to death, she will not be eating or drinking, you will see heart rate increase and O2 levels falling. Labs will be off. I think she has a way to go yet. Ask her MD for a prognosis.
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Speaking only to the issue of a home caregiver handling that daunting task, I think LastOne may feel as other caregivers I know do: the responsibility is on her to observe, notice and take action. If she misses something a skilled RN or other health care professional would, she'll feel guilty because it may be an early warning sign.

In a facility, it's the responsibility of the nurses - big difference.. more of them, skilled training, quicker access to diagnostics, sometimes physicians on staff or available quickly for phone consults, while home caregivers don't have those advantages and assistance.

For me and others I know who are home caregivers, this self questioning, self doubt, and almost constant state of wondering and worrying goes with the territory. It's not unusual in my experience.
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Why is that? Why is it that you can care for her there but can't have her die there? I'm really asking, I'm curious.
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