Lots of questions but 1st Hi, and thank you for your posts. I don't feel as alone now. Even though I've just been a caregiver for 8 months I feel I'm already burnt out. I have fibromyalgia and heart problems. All my life and even now my mom has begged us kids to not put her in a nursing home, she's very much an introvert, low self esteem and I'm very worried to put her in one.

She had a fall, broke her hip, had a stroke, and went into Afib, all at same time. I found her at her home on the floor Nov 2018. She was in neuro ICU for a week, had hip surgery, then went to a rehab hosp. Learned to eat, walk etc again. Came to live with husband and I after rehab. We had home health PT, OT and Speech to the home for 6 weeks. She had pureed food in the hospital & rehab but then given the ok to eat whatever she can chew and swallow ok.

She was starting to walk great, no need for a walker but she was depressed so the Dr. put her on Mirtazipine, she got severely depressed and they pulled her off after a month. A month or so later everything 'tasted sour' tasted bad, the food was bad, etc. She snurled her nose up to whatever I fixed, I would fix her something else only for her to just eat a few bites of it. The Dr. did not think it had anything to do with the antidepressant. He put her on steroids to help with inflammation from PMR said it would also increase her appetite. She started getting weaker and weaker and barely eating. The Dr. said she was still recovering from the stroke and hip surgery. Then said it was her dementia although they thought she's only stage 2. Then it was supposedly old age (82) and her heart problems, She got worse physically, no desire to get out of her chair, she lost interest in doing things and going places.

Her heart Dr. said "there's nothing more he can do for her except the heart meds she's on) We had to switch PCP and new Dr. said looking at blood work back to her stroke and the symptoms she was having, she thought it was stomach or colon cancer. Mom refused to get an EGD to find out, and refused any treatment so the Dr. said she's lost 15 lbs in just 3 months (at that time) and she's refusing treatment, she can't do anything else to help and got us an in home hospice referral. They have her diagnosis as protein malnourishment from cancer with dementia and physical decline.

In May the social worker came out and said "well you're terminal and usually the Dr. knows you only have 6 months or less to live when they call in hospice, said cancer is eating the protein that you put into your body and that is why the weight loss and not wanting to eat. By July 31st she was down 33 lbs. with a weight of 82 lbs. Her dementia is far worse, she's very mean, always negative, gripes about everything, everything gets on her nerves. Nothing makes her happy. Her memory span is about 15 seconds some days and she asks the same question over and over and over. Other days it's not as bad but still asks the same questions over and over. I had already grieved her being gone, gone through the sad, mad, stages. Every morning I wondered if I would find she had passed in the night, but now she's starting to eat again, like every 2 hours she's starving, she's gained 3 lbs back in the last two weeks but she's fallen twice in the last week. Went to E.R for a bad cut on her arm and a cut on the back of her head this week. She has extreme anxiety about everything, I mean everything. I've asked family for help with her but it's just me and my husband doing the caregiving. Next week Hospice is getting someone out for 2 hours a week. I was ashamedly relieved that she would pass away before the end dementia stages. Now I don't know. She says she wants to live for 3 years. I can't fathom anyone wanting to live the way she is. She can't drive, can barely dress herself, can't shower, or toilet by herself. She has headaches. Does cancer stop someone from eating only to start again? Does protein malnourishment just go away on it's own if not caused from cancer? Is this end of life symptoms? Also there's no UTI. Thank you.

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HI Lynn. I'm sorry for all you're going thru, let me start there. This is a murderous journey with all the issues your mom is facing, and I feel your pain.

Your mother making a remark like "shoot me and bury me in the yard if I get bad" is so stupid and so highly irritating it's ridiculous. My mother says "just throw me out in the street to die" which doesn't help ME in any way, now does it? These types of remarks minimize the almighty effort that's required of us to care for them, you know? Rant over.

MY mother has dementia in addition to tons of other issues too numerous to mention. I pray every day that God takes her before something even worse happens, or before the dementia gets very severe, because a life of pain and suffering is not a life. It's existence, and a huge burden for ALL involved with the gruesome journey. There's nothing to feel shame for in uttering a statement like that, either, in my humble opinion. I will feel a huge sense of relief once my mother passes and all the suffering comes to an end. I myself would never want to live under these circumstances, so I find it hard to understand why ANYONE would.

Which brings me to the subject of dementia. I believe that hunger comes and goes with this disease, which changes face CONTINUOUSLY. Your mother saying she wants to live for 3 years does not mean she WILL live for 3 years, nor does it mean she'll remember making that statement 15 minutes after she made it. As far as cancer goes, you have no definitive diagnosis on that, if I'm reading what you said correctly. So it's really hard to say WHAT all is going on, right? End of life symptoms are different for everyone, but rarely does someone get hungry and start gaining weight when they are dying. As the body shuts down, the person generally does not want to eat anything at all. Hospice should be able to guide you about all of this and tell you what they think is happening.

In closing, I think you need to start scoping out Skilled Nursing Facilities for your mom in case she rallies and goes on to live for years. You reach a point where having her in your home is just TOO MUCH and will ruin your life and/or your marriage. Promises we make others in good times don't count when the bad times hit and the caregiving responsibility becomes THIS enormous. You're simply not qualified, same as I'm not, to care for a mother with more issues than Newsweek. This is what nursing homes are FOR. They have shifts of caregivers to care for her 24/7 which is what you are trying to do all alone!
All the best of luck, my friend
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lynn59 Aug 2019
Thank you lealonnie1! you know what I think back on the rehab hospital social worker telling me I wasn't qualified to care for mom, and I thought, I took care of my Quadriplegic Cerebral Palsy, learning disabled grandson who can't walk (I can't lift him anymore) so I think I can take care of a woman recovering from a stroke and broken hip. That social worker I believe knew Mom had dementia and what it would entail but didn't tell me that part. I will be first to admit I'm not qualified. Correct we don't know if she has cancer or not. So it's just a guessing game of what's going on with the protein malnourished part. Thank you for your reply and I'm so sorry your mom says stuff like mine does. It truly is a monster disease, but hospice hasn't been that helpful to be honest because they don't see her saying the same things over and over or asking the same questions 100 times a day so they think she has mild dementia issues. They also can only go by what their paper from her Dr. says about cancer so they don't have answers on her symptoms. headaches, dizzy etc. I thank you so much for your honest reply. Best of luck to you as well …
Hi Geaton. Yes, I now under the circumstances agree 100% that it is an unfair thing of her to ask. Growing up she would always say just shoot me and bury me in the backyard if I get bad, or I hope the good Lord takes me before I would ever get bad enough to be a burden because I'm not ever to live in a care home. We agreed back then because we were younger and didn't think about anything happening to her.. she was always in great shape, 82 years old and not on a single med when she had her stroke, still drove, lived alone, went with me on little trips etc. I've told my daughter and husband do not keep me at home if I ever were to get this bad. I do not want to have someone stop their lives to take care of me. It's too much to ask..
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Thank you. I figured I would keep her here until after the Holidays. Then start looking for a dementia care home.
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Wow, what an exhausting journey, and it's not over for you and DH. I'm no expert on hospice but my 97-yo auntie who was skinny as a stick her whole life is suddenly eating like a horse and has gained 13 lbs! I think dementia/memory issues does weird things to their "appetite".

As for your mom begging you not to put her into a nice, caring is unfair of her to request this. She had no idea what she was asking you and your DH to do. Since she seems to be "rebounding" who knows how much longer she can live. Do you really want to find out the hard way? Get her into a good place nearby and don't have 1 minute of guilt over it. She will get the care she needs and you will get your life back. Your first responsibility is to your DH and family, not to your mom, although I know you love her.
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