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When nurse came my mom qualified for hospice care and said they wanted to keep her comfortable. She is in later stages of dementia. Otherwise, with exception to getting many UTI's, her health is pretty good. They said she couldn't go to hospital for care if on this. We decided to give it a try as we could use help and would get someone for shower or sponge. Lately the most thing she likes to do is sleep during day. Nurse said to let her sleep. Said her body was closing down. This was very depressing to hear. Does anyone know if this is true? She at most times has a pretty good appetite. Does this make any sense? She is losing her ability to walk even with a walker. Very scary! PT denied service to her as said it would not help. My brother says he feels like we're giving up on her. She is so sweet and loving. Always telling us she loves us. She will soon be 92. Nurse doesn't think a big deal is she won't take her regular meds but my brother is insistent on her getting them to keep her living. This has been one of the most stressful times of my life, especially since covid. We cancelled all services in March of someone to be with her as of fear of covid, but are now feeling we may need a little time due to essential things if we must get out. Do you think it's right to be on hospice and would you take a chance of a little help to get out for a few hours a week at this most difficult time? Thank you!

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Dementia is terminal. The later stages are ugly to witness, and even uglier, I would imagine, for the sufferer to live through. All quality of life disappears, for the most part, leaving only confusion, incontinence, agitation, infections, and the body shutting down, organ by organ. Hospice is the kindest, most humane way of making our loved ones comfortable during a difficult transition period. Why would you want your mother to keep going back and forth to the hospital? Being kept alive to continue to suffer is what is inhumane, in my opinion.

My mother lives in Memory Care and she is 93.5 years old. She has one thing after another wrong with her; tomorrow, she'll have a wisdom tooth pulled out, believe it or not, just to add to the melee. She's in chronic pain and wheelchair bound. I beg the doctor to recommend a hospice evaluation for her, but no, she's 'not ready yet' because she weighs in excess of 190 lbs. All that means is she likes to eat; that's her last pleasure left in life. If she was on hospice, for godsake, they'd give her the pain medication she NEEDS to stop hurting so badly.

But no. We as a society insist on prolonging our loved ones' lives to the point where all that's left is suffering and misery.

The point of hospice is not for you to get out for a few hours a week, although that's a nice side bonus. The true purpose of hospice is to allow your mother to stop suffering. To allow her to stop being schlepped back and forth to hospitals in a vain effort to cure one ailment after another, only to keep her alive for a few more days, weeks, or months. What for? So dementia can ravage her even further?

Yes. I think it's right to be on hospice. And I think it's wrong for your brother to insist on prolonging his mother's life which may be an effort to alleviate HIS potential guilt once she passes. Nobody wants to say they had any hand in someone else's death. In reality, only God has a hand in that decision. Hospice is only there to ease the pain and anguish for ALL involved.

Wishing you peace in the knowledge that you are making a wise and good decision on behalf of the mother you love with all your heart.
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Hi Karyll,

My 86-year-old mom who is in memory care has had five UTIs since December, so that many courses of antibiotics. She's barely taking any fluids and can no longer empty her bladder well. So she's also developed a blood clot in her leg and was put on a blood thinner. She's lost 30 lbs. since January.

My siblings and I just made the decision for hospice this past Saturday. We had already had a conversation about it, then the director of memory care called to suggest that we consider it. The facility staff has been very kind and caring, especially since we can't even see her, and they all speak very encouragingly to us. But we have no illusions that Mother is going to "get better". The decision was made to stop most of her medications. The only one she takes daily now is for anxiety; the rest are 'as needed', i.e., allergy meds, pain relief, milk of magnesia. As the hospice rep, Kelly, put it, we will now pivot to "aggressive comfort care". Per staff request, Kelly has ordered a hospital bed for her. She will see her several times a week to start. An aide will bath her three times a week. All supplies (bathing, pullups, wipes, and equipment) will be managed by hospice. This is a huge gift.

Our circumstances are different since your mother is at home, but all the more reason for you to call in hospice. You need a break and the support of professionals who know what's happening. I understand your brother's feelings, but once we all admitted that Mother was not going to rally, that dementia is a terminal disease (we already knew that really, having gone through it with our grandmother), and read Mother's Advanced Directive again, the decision was made. And, as a doctor friend who's gone through this put it, "Just because you can, doesn't mean you should."

Warmest regards.
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The chronic UTI's are the problem. Some people can never get rid of them. After a while, the antibiotics don't work. Her body has built up a resistance. No one wants to lose a parent but Mom will never improve. Her Demenia will progress to the part of the brain that controls heart and breathing. When that part dies, so will Mom.

Hospice nurses are trained for what they do best people tobdetermine end of life. This last UTI probably did her in. Her body just doesn't want to fight anymore. Its time for nature to take its course. 92 is a long life. And her meds will do no good at this point. Her body is shutting down.

Keep her comfortable and be there for her and you.
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We don't have formal hospice where I live so there are differences but my mom needed a very high level of care for several years at the end of her life. While she lived with me she gradually became mostly non verbal, slept 18 to 20 hours a day, needed to be fed her pureed meals and was unable to walk or even move much on her own, I reluctantly admitted her to a nursing home when it became too much for me and she lived another 18 months beyond that - I'm telling you this because I want you to understand that some people are extremely resilient and can live on far, far longer than you ever dream could be possible and going it alone might work for some but it just isn't sustainable for some of us. My advice is to take whatever help you can get, no decision is etched in stone and you can always make the choice to leave hospice to treat any acute condition that crops up.
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I'm sorry about your mother's condition. It must be very sad to face this when it concerns a parent. I have encountered it with my LO, who is my cousin, and for whom, I am responsible. I knew her wishes, as we had discussed it many times, especially, when her mother, my aunt, was sick and bed bound. With my LO, at a certain point we went with comfort care only.

Multiple doctors at the ER had asked me about hospice. They said they would strongly encourage it. Going there for various things, like UTI were horrible experiences and something that she did not need. Plus, now with covid, there would be many reasons that it would NOT be a good idea for someone with advanced dementia. She would cry out in pain from needles or catheters and it was not helping her to keep going through that. On hospice she does get antibiotics if a UTI is suspected. Hospice has provided so many things for her, like bed, high back wheelchair, supplies, nurse, bath aid, social worker, chaplain. It's amazing. This was in addition to the care at the MC. She improved at first, but, the illness progressed and she is now bed bound, non-verbal and hand fed. We discontinued any meds that are not for her comfort. I can't imagine her progressing this way without hospice on board. They provide meds to help with any pain. I know she'll likely need them as she gets closer to the end.

Our goal is comfort care and not extending her life. Regardless, the condition will progress. I know that she would not seek measures to extend her life under these conditions.

Bringing outside help in is a personal decision. I hope you'll get some responses from those around here who have done that. With the right precautions, I see no reason, it can't be an option.
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Karyll--
I'm sorry for this situation--I'm it in myself with my mom.

Your first posted word was "Hospice" which, you know, means comfort care to keeping a person COMFORTABLE until they rally or pass away.

At 92, your expectations to see your mom rally and be healthy are not really grounded in reality. Your brother, especially, as he is pushing for her to keep taking the meds he thinks are keeping her alive---and perhaps they are, for a few more days, or weeks.

The nurse is spot on. Mom's body is slowly closing down. My FIL ate dinner the night before he died! My dad was in a coma the few days before he went. Each person is unique to their own way of passing.

Can you and brother sit down and make a list of things to do when she does pass? Make the list and tuck it away--believe me, when she does go, you will not be able to remember anything for long. It will be easier to do it when your minds are clear.

Everything you describe is exactly what one would expect of someone in Hospice Care. Yes, keep her clean and let her eat if she wants, but DO NOT push food as she could choke very easily. Don't try PT for walking, etc. Let her sleep. Play music she loves and keep her space drama free.

I don't see the harm of having someone in to help you a little. I don't understand you sentence 'needing a little time due to essential things if we must get out'. Maybe you can clarify that?

This is a difficult time and I am sorry for your pain. But, you must look at the whole picture. Would your mom want to live forever like she is now? Let Hospice guide you, and yes, definitely keep them on board!! You can be on Hospice and receive outside help too.

((Hugs))
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