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Hello - My mother is in hospice for chf, but she has other serious comorbidities. Since Covid, the social worker has not visited, but he has called my mother and me separately. He will be visiting with his supervisor tomorrow, and I know they will be asking how my mother is doing. I am going to be there too. What questions can I ask during the visit? My mother is declining, but she is still of sound mind and still managing in her own home. My mother is never honest about how she is doing. Do I just keep quiet when she lies? Do I tell them the truth? I’m sure the hospice nurses have filled them in on my mother’s current state. I don’t want the visit to be unnerving for my mother.


I would love to see my mother go to the hospice facility soon. It would be such a relief to me that she will be taken care of. I worry so much about her when she is not feeling well. And my health is not good. She’s been on hospice for almost 1 yr and 8 months.

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I might be very candid with the hospice social worker of what is going on and that you have your own health crisis that prevents you from further caretaking. See what resources she can find for your mother. If that is not adequate, I’d explore alerting county social services so they may intervene if she resists the help. Sometimes, sick seniors have magical thinking about their abilities, even if they don’t have dementia.
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When my dad first came home on hospice he was putting on a very positive face, denying the reality of what was going on. I countered this with the hospice staff when they visited by literally meeting them outside in the front yard when they came, and giving them a heads up on what was actually going on. It was always appreciated. We spent a few minutes talking outside, my dad was inside not knowing they’d arrived yet, and they got to go in knowing better how to talk with him. You absolutely need to tell them the truth, both about your mom and your own health.
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We had a meeting with the hospice social worker and his supervisor who happens to be the head social worker at our hospice facility. My mother did most of the talking and she made it clear that she is most happy in her home and she has the support of hospice and me and my husband because we live close by in the same community. I didn’t contribute much nor did I contradict her when she said that she has a few down days, but mostly she feels good. When we finished, I followed them out and said that she has more bad days now than good days and this is why I am feeling so concerned about her. I explained that she will be seeing a dermatologist soon for an evaluation on her squamous cell growths on her body, and also what the doctor thinks about my mother’s breast which is very bad now. The mass is growing weekly, if not more. I feel she will need more round the clock care soon and she doesn’t want anyone coming into the home to care for her - like with shift work. And I can’t do it. She will need wound care soon from what I saw of her breast today. The mass is breaking through. But I can deal better knowing that we will see how things go as we go into winter and if she needs to go to the hospice facility, they will keep it in mind. I can deal with that. Weeks is okay, and I think we will be there anyway. It will give me time to prepare too.

She is not on hospice for her breast cancer - only for the chf. But the breast cancer has become the pink elephant in the room. It is very stinky and itchy, even under her arm. The dermatologist can’t make a formal diagnosis, but at least maybe she can give some cream and some advice on how to care for this going forth. So much to think about.
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NeedHelpWithMom Oct 2020
You have your hands full. I’m so sorry that you are struggling with this.

I hope you find a solution soon. Was the end of life facility addressed?

Do not neglect your own health.
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Hospice will be all about your mother's wishes, and likely not your own. They will want to help you adjust and adapt, and support you. If you are alone with the social worker feel free to address anything. If not, support your mother. You are correct that the nurses are charting their observations and will have let me have access to those notes. Unfortunately in facility care is quite rare now. To jump ahead to when Mom needs it may not be the time frame that Mom wants for that discussion. I would simply be more quiet than not, and let Mom direct the visit. If she says "I am doing really well" you aren't there to say "Mom, no you aren't". If you have time alone, however, you could say "I worry that Mom thinks she is doing more well than she really is".
And basically on your OWN time, or by phone, discuss all you are uncomfortable about discussing (and kind of should be) in front of Mom. Remember the journey is Mom's to direct and control as much as she can.
Wishing you good luck. Has to be so hard to be in this position when you are not well yourself.
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Mina; It is certainly time for your mom to be in a care center; whether that is a Hospice Facility or a Nursing Home, it seems clear to me that with your health issues, you are putting yourself at great risk by continuing to care for your mom at home.

Does the SW know about your dx? If not, s/he should.
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Mima, I'm so sorry that you are so worried about your mom. Please be honest about your own health problems with the Social Worker.

Your mom's care should not fall entirely on your shoulders! Ask about respite care and definitely find out what the facility costs would be. If mom has long term Medicaid, the room and board part would be covered.
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nymima,

Write down a list of any concerns to discuss.

Your mom’s nurses will tell the whole story to the social worker. They are used to the elderly patient’s embellishments.

I highly recommend an end of life facility. My brother was in one. He did not pay anything out of pocket for his care.

My brother actually went twice! The first time he ended up walking out of the facility.
He surprised us all with his improvement.

My brother returned to the facility several months later and peacefully died.

The hospice facility will provide a social worker, clergy if you are religious, and excellent nurses that make sure the patients are comfortable.

It is important to share your health issues with the social worker so they can see an end of life facility is needed for your mom.

Hospice provides counseling before and after your loved one dies. I had a very positive experience with the facility that my brother was in.
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Hospice facilities are only for respite and people very close to death, usually within 2 weeks. Have you ever seen one?

You know that she would be financially responsible for the room and board portion of the facility and that can be as high as 1k daily. Isn't there a better solution to helping you not worry?

In my opinion it would be cruel to place her in a hospice facility just to make yourself feel better.
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nymima Oct 2020
The thing is that I have non Hodgkin’s lymphoma. I’ve been treating for almost 4 yrs. My mother thinks I have auto-immune diseases that require infusions. I don’t want to tell her I have cancer because we lost my sister to brain cancer and my other sister to liver cancer (from cirrhosis). I’ve been a caretaker for my mother for 8 1/2 hrs now because she is blind. I see her decline and I am worried she will have an accident in the home. Her blood pressure is very low due to an expired pace maker she received in Jan of 2010. I am very weary. I have tried to go along with her wishes of remaining in her own home. But I feel the time is coming when she would be better in a hospice facility where she can get the care. It would be a God-send to me because I can still see her and she would be well cared for. I can’t be there 24/7 for her as my own health is at stake. I have done this fir a long time too with my dad who had PD and I stayed with my sister (brain cancer) the last 3 months of her life in a NH. So fir 10 yrs now, I have been a caretaker and it is going to be the end of me. It is better for my mother. She has aggressive breast cancer (IBC), invasive skin cancer (which we still see the dermatologist every 3 months for MOHs), an out-dated pace maker, blindness, and end stage chf. So much going on we don’t even know. Maybe even kidney failure. She was stage 3b almost 2 yrs ago when we were still doing blood work.
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Since the hospice nurse has already filled the social worker in, I’d just try to let the visit be a positive for your mother. You can call the social worker beforehand or chat for a minute outside earshot of your mother, but if your mother wants to chat about things that make her happy, so be it. The social worker knows that things aren’t necessarily the way she says.

With my LO’s social worker visits, she brought her iPad and she played my LOs favorite music videos. Just positive, friendly, supportive time.

When away from mother, I’d ask the questions about qualifying for inpatient hospice care.
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i would try to meet with the sw separately.

Have a typed up, bulleted list of YOUR concerns ready to hand off if they are not willing to talk to you.
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