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Old 02-01-2012, 07:15 AM   #1 (permalink)
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Default Bittersweet?

Another bridge to cross, my moms palliative care worker has found her a permanent bed in a care home. Although I know this needs to happen for so many reasons it is still a hard pill to swallow. I never thought my mom, my once strong and active mom, would be placed in a care home at the age of 56. I know I need to get over myself and know this is best for her it still is a blow. She has been doing respite in various homes when the beds come available for the last few months but this is different. The family has decided we will do respite the opposite way now and she will come home for a few days at a time. Its another step, and a hard one for me. I know she will get the care she requires and I know it will be a huge stress off my stepdad her main caregiver, I guess in ways Im still trying to convince myself. Everyday I wake up and roll over in bed I am grateful that I can. I pray for everyone affected by this horrible disease, it shows no mercy.

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Old 02-01-2012, 07:44 AM   #2 (permalink)
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Default Re: Bittersweet?

missmineau,
There are no words that can lessen the pain and grief your going through. This disease is horrible, and relentless.

Your love and your family's love for your Mom is obvious.

Hang in there.
My thoughts are with you and your family.

Casey
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Old 02-01-2012, 08:07 AM   #3 (permalink)
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Default Re: Bittersweet?

It is a real trial going in and out of hospice. My pals is stable now for 2 months on palliative care, but hospice was such a break for me as her sole caregiver. She is doing much better at home and is happier here. Sometimes I think hospice does not know what to do with an als patient. The patient exhibits symptoms that would indicate death is near, but the mind is still good. It throws them, since so many of their patients are terminal with cancer or other diseases and do not last long. When my pals went to hospice, the main physician was a neurologist and that was a blessing, because she knew what was going on.
Bless you in this trial. This too shall pass.
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Old 02-01-2012, 10:39 AM   #4 (permalink)
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Default Re: Bittersweet?

My stepdad is also my mom's main caregiver, but she'll never get her hospice care outside of the house. She would never want it, and he wouldn't make her do it. It's such a terrible disease. My mom will be 56 this year, if she makes it to her birthday.
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Old 02-01-2012, 11:08 AM   #5 (permalink)
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Default Re: Bittersweet?

I can feel the pain in your post. I am my mom's primary caregiver 5 days per week. 5 other family members take care of her for 2 days, and it is TOO much for them. The eldest sister has now started looking into nursing homes. It is breaking my heart, and I keep praying that I can muster the strength to just do it alone. I have my own family to take care of, so they already don't get much from me because I'm rarely home. We've taken care of her in her home for 2 1/2 years. She seems to be nearing the end now. I feel horrible guilt when I hope that she passes before my siblings can put her in a home. My mom was also strong, active, and the most wonderful mother--this stupid disease has taken everything. It sounds good that you will be bringing her home for a few days at a time. I know I'd feel much differently about our situation if we were going to do that. It's great that your mom's family/caregivers came to a mutual decision that will be good for you all. Take care.

Laura
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age, bed, caregiver, family, palliative care, respite, stress, swallow


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