This is such a hard decision to make. -

This is such a hard decision to make.


My Mother is in the hospital Dx with UTI, High BP, MRI revealed she had several old mini strokes. She can't swallow & needs a FT & Pacemaker. She's been in the hospital for over a week and we need to make the decision to have her go to Hospice or feeding tube & pacemaker. This is extremely hard because she didn't have a directive. I wanted to put her in Hospice and let nature take it course, but that's what I want for myself when the time comes. I really don't know what she would want again.

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You did the right thing. I know it's very, very painful and it'll be natural for you to question your decision when you'll be going through the grieving process - but you'll eventually reach peace that you've made the right decision. Suffering should be an absolute bare minimum in the last months, days, years of life. My mother's labs recently showed she could easily live - another decade - because they look fantastic (her only issue is a slight elevation of cholesterol; who doesn't have this at her age??) - however - she has had no quality of life since 2012, when the post-stroke/vascular dementia effects really kicked in over the course of one year. Since then, she's been homebound because these effects; loss of mobility/bedridden, skin breakdown that isn't healing due to high blood sugar, high bp, poor circulation, severe urinary incontinence; her diaper needs to be changed very 1.5 hours; her overnight urine output is 3 liters - yes - 3 full size bottle of Gatorade is how urine she's outputting; she can't tolerate catheters because of ongoing vaginal infections, she's chronically constipated - and has very painful hemorrhoids so she bleeds every time she poops, she has no teeth so all food has to be pureed, she has multiple food allergies so she's on a very restricted diet, she had rheumatoid arthritis and can't feed herself, she aspirates her food, she's now raging p!ssed all the time because she's lost even more of her verbal recall due to vascular dementia...she is just existing in a shell of a body - and her future is filled with more painful health issues of this or that. Last month, she had another mini-stroke, the first since 2012. Most importantly, she no longer has friends because of her decline. She misses her husband/my now deceased father terribly. It's just so gut wrenching awful to see her slowly decline - and I can't reverse it - and I can't stop it progressing even further. I actually told her doctor several weeks ago that the next time my mother gets a fever - I'm putting her on hospice and letting nature take it's course because it's criminal, selfish, inhumane - for me - to keep her in this condition, to keep her "alive" just for the sake of being "alive" because frankly, I'm a little afraid to let go as she's my last family member. I never had the opportunity to have children, so taking care of my parents was like they were my children. But seeing her decline so slowly and painfully...No way would I ever agree to this condition - for me. She doesn't have the mental capacity to make the decisions anymore. This is why I've made the decision to put her on hospice the next time she gets a fever. My heart goes out to you. You're loving your mother - by not allowing any more suffering - because decline doesn't get better - it gets a hell of a lot worse. You want your last memory of her to be in comfort and at peace. I'm crying now - with you - knowing that you're doing the right thing for her. It's okay to let go.
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Well done, Bev. (((((hugs))))))) at this hard time.
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Thanks everyone for all your kind, wise and thoughtful word of support. My twin brother and I have decided to place our Mother in a Hospice Facility, without the Pacemaker or Feeding Tube. We're allowing her to go through this transitional phase with grace and dignity. Yes, I do have a great support system and I thank God for them everyday. Thanks again everyone, Bev
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This is agonising for you. A terrible decision to have to make, and just at a time when you're emotionally raw in any case.

First, the factors in the decision. Start with the standard assumption that any procedure requires the consent of the person to whom it is to be done. Can you get it? If not, that is a good reason not to go ahead with it. If you can - even if it's not watertight, textbook consent from a fully-informed, competent adult - then follow through with the same questions you would ask if you were the patient: what are the risks, what are the potential benefits, on balance is it worth trying. Consult your mother's doctors, rely on their clinical judgement. They do know better than you, and it is perfectly all right to defer to their opinion.

Then the emotional side. It is not *fair* that you are having to make this decision for another person. You are not and do not claim to be God, and yet you are being required to make life or death choices. Acknowledge the basic unfairness of this, and take comfort from knowing that you're doing the best you can.

Finally, make room for the grief that you would be feeling even if you didn't have the extreme stress of this decision on top. Even the best case scenario is a sad one to have to face. Whatever you decide, I hope you will be able to ensure that your mother is kept pain-free and comforted: what you're aiming for is a soft landing.

Do you have friends or family with you to talk this through with? Please keep in touch and let us know how you're getting on.
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Is mom able to communicate and understand at all?

My mom, who was 91, post-stroke, dementia and with partial aphasia, fell in her NH. It turned out that she'd fallen because of a blockage in her heart and needed a pacemaker. It didn't seem like a great idea to us, but mom was still able to understand and communicate yes and no. She chose yes, enthusiastically. She's still with us 2 1/2 years later.

If you have no idea what mom would want and she can't communicate, i might try asking the docs what they would do if it was their mom.

As Jeanne says, you will second guess yourself. We still do, even though it was mom's choice! Good luck, and know that we're thinking about you.
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My heart goes out to you, BrieTem. This is definitely an extremely hard decision to make.

Your profile says that your mom has dementia. That is a very important factor to consider, in my opinion. What was the quality of her life before she went into the hospital this time? How old is she and how long has she had dementia?

Do a little research on feeding tubes in the elderly, and specifically the elderly with dementia. There are many studies that suggest that this wonderful technology is not so wonderful for these population groups.

Do the doctors think she is healthy enough to undergo the procedure to implant the pacemaker?

I share your decision about what I would want for myself in these circumstances. If I knew what my mother wanted, that is what I would do for her. But in the absence of that knowledge I would decide based on my own beliefs, and I would choose hospice.

Which ever way you decide, you are likely to second-guess yourself and have regrets. Do your best to make a good decision, and then try to let it go. All any of us can do is our best.
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