This is my 1st post on this forum or any forum regarding the Caregivers role. I’ve been my 94-year old mother's caregiver for 2 years or more. Even though I’m from a very large family, I feel as if I’ve taken on most of the responsibilities as caregiver. At times, even though I’m taking charge of the caregiving, I get comments or I hear comments through triangulation within the family that they are not pleased with what I am doing. I’m not a nurse, I’m not a CNA nor do I have a certificate in this line of work. I’m doing the best that I can just because I love our mother. As many siblings that try and bring me down, I do have allies that support me. I do most everything for her; changing, dressing, preparing meals, etc. A few of the family members have brought up the in-home hospice route. After all that I’ve mentioned, when does that discussion come to fruition? Is my mom ready for that? How would I approach her regarding the hospice? I don’t want to polarize her, but I feel it’s a discussion I need to have with her. Any thoughts or ideas would be greatly appreciated. Thank-you.
Hospice is for end-of-life. When your mother is ready for hospice, you don't discuss it with her. You call a hospice provider and a nurse will come to evaluate her to determine if she meets their criteria. All hospice does is provide medications and necessary supplies (like diapers) to keep her comfortable. They provide no hands-on caregiving. A nurse comes by at least weekly to take vitals and evaluate her condition.
I've got to ask - How old are you? I'm guessing you are in your 60's or 70's.
Are you physically able to do all that your mother needs? You say you are doing the best you can because you love your mother. You can love her and have professional caregivers care for her needs. You do not need to take this on all by yourself.
Someone would come out 2x a week to help us with a bath for her, that was a help to us, which made her happy. A nurse would come out once a week and keep an eye on her bed sores when she had them, and keep an eye on her vitals for us. And none of this would cost anything because Medicare pays for hospice.
I used the word hospice, and said, it's end of life care but you can be on it forever, and if we don't like it we can cancel it so it's no big deal. Some people are on it for years.
What health problems does Mom have? Hospice is not there 24/7. You will still be doing most of the caring. There was a poster, sometime back, that was able to get an aide for 4 or 5 hours at a time. Where I live, we get one for a hour 2x a week, just to bathe the person. Even though Hospice is paid by Medicare, it depends on the Hospice and the availability of aides in your area.
Hospice will come and evaluate Mom. They have criteria that has to be met.
I got all the equipment that I needed to care for him safely.
I got all the supplies that I needed. Both supplies and equipment were delivered to my house.
The Nurse came every week.
The CNA came 2 times a week. As he declined 2 came as it was safer with 2.
I learned how to use a Sit to Stand. I learned how to use a Hoyer Lift.
I got support and the education that I needed.
YOU can tell your mom that you and she will get more help.
You can tell your mom that she can try the care that she gets from Hospice for 30 or 60 days (pick one) and if she does not like the care that she is getting she can go back to using her old doctor. She may feel better knowing that this is a trial basis and she does not have to stay on Hospice if she does not want to.
My FIL had nine operations over 15 hospitalizations to gain six more years of life. Neither he nor mil would even consider hospice until the doctors finally said there was no hope. Fil died two days into hospice.
While hospice doesn’t necessarily hasten death, they are necessarily death focused. Why go there if you don’t have to?
After you talk to your mom you can call the hospice agency of your choice and they will come out and do an assessment to see if she qualifies for their services, and if she does they will contact her doctor.
To qualify for hospice, she needs to be diagnosed with a condition that cannot be cured and will, in the physician’s opinion, make death likely within six months. This does not mean that she will pass away within six months. Just that the doctor thinks it is likely. Some live for years in hospice.
You can ask her doctor if she would qualify and you can still decide yes or no to doing it. In fact, you can say yes and then later change your mind and pursue aggressive treatment. You just can’t have both at the same time.
If she is in pain or suffering or just tired all the time and life is a struggle, she may wish to stop the constant doctor appointments, specialists, meds, and treatments.
Does she have dementia?
My MIL was 77 with COPD and some other issues. She kept feeling short of breath, going to the hospital, getting intubated in the ICU, “hospital psychosis” and then weeks in rehab only for the cycle to begin again once she got home again. She absolutely refused to acknowledge that death might come within six months and was very angry at the idea. But she agreed to home hospice because she knew the cycle of intubations was terrible. So, she had hospice at home plus an angel of a live-in nurse and passed peacefully a few months later.
My dad also had home hospice, also to avoid constant doctor appointments and hospitalizations. In his case, he actively wanted to die. He had dementia and other conditions.
good luck sorting it out.
Older family members are still from the "Assisted Living" being what they grew up with as a horrible "nursing home." Like an asylum or modified jail. Same with 'hospice" meaning they will die within 6 months. In home hospice is the same as what you do now, except a nurse comes to help a few times a week. Home Hospice means you must be there 24/7.
Your siblings are just as cruel and selfish as mine were. Most people here will tell you if these critics aren't even involved with Mom's care, they can take their opinion and shove it. I would tell them that, too! Or basically just hang up on them.
"If you think I'm not doing a good enough job, then feel free to come get Mom and take her to your home."
Stay strong and do what you need to do to get through this. It's not easy.
Hospice care simply means mom gets to stop going to the hospital to be poked and prodded for no useful help. If she'd like to stop doing that and would prefer to be kept comfortable instead, you can ask her doctor for a hospice evaluation. She will only be accepted if it's felt that she has 6 months or less left to live. At first my mother said no to hospice care, then changed her mind after a few trips to the ER for the 4 hour minimum and getting no real answers.
In home hospice means an RN visit once a week, a CNA 2x a week to bathe her, a chaplain and social worker once a month or so to visit. All meds and supplies including a hospital bed are free to mom and all paid for by Medicare.
Ask mom her feelings on the subject if you think it's appropriate.