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.
I really felt what you said about doing the most, yet being criticized by those who contribute little or nothing. From my experience, having many siblings doesn’t necessarily mean more help—especially as we grow older.
We often think that siblings should share similar values and ways of thinking, but in reality, that’s not always the case. What you think, care about, and expect may be very different from your siblings. It’s sad, but that’s human nature—siblings or not.
There’s an old Chinese saying: one mother can take care of ten children, but not all ten children will take care of that one mother.
So when it comes to caring for your mum, despite all the unpleasant noise around you, I hope your conscience will stay strong and guide you through. Your time with her is limited, and right now is the only time you have to do what you wish for her.
If you’ve done your best for her, you’ll be able to live with peace in your heart. You won’t be haunted by thoughts of “I wish I had” or “I should have” in the future.
As for whether to talk to your mum about enrolling her in hospice care, I think it’s important to first reflect on how you truly feel about it. Are you comfortable with the idea? Is it what you genuinely believe is best for her? Be clear with yourself before approaching her.
If your answer is yes, then you can find a suitable time to gently explain to her what hospice care is, what she can expect, and most importantly, reassure her that your love and care for her will never diminish. Let her know that you are not leaving her in the hands of others, but instead making sure she gets the best possible support.
When we enrolled my mum (she was 68 at the time) into hospice care, we explained that the medical team would visit her at home, so she wouldn’t have to go through exhausting trips to the hospital. At the same time, my sister and I continued to care for her ourselves, even after we brought in a professional caregiver.
I think what matters most is that she feels safe, loved, and not alone through this process.
Finally, caregiving is not something everyone is meant for. As you said, we are not professionally trained, but I truly believe that our sincerity, genuineness, and the care we give from the heart will speak to our conscience. More importantly, your mum will feel deeply comforted and blessed to have you by her side, caring for her until the very end.
I hope my words can bring you some comfort and guidance during this challenging time.
Tell your family members to butt out. You could do it nicely, if you like. Just say "thank you for the suggestion. What I actually need and what mom needs would be someone to sit with her for x hours x times a week. Is that something you can do for us?"
Or "Thank you for thinking of us. What you could do is to make dinner for us on mon wed and fri and that would be a huge help" or it would be great if you could do laundry or clean the bathroom etc etc.
Sit down and write a list of things you actually need so when they start suggesting things YOU should be doing, you can just redirect them. I think they will continue to suggest and criticize, but you will have something prepared to say to them right off the bat. You do not need to defend yourself or your care or the treatment plans etc. Often, telling them that they can come to stay for a week or so (or taking your loved one to their house) while you take a rest is enough to get them to go away for a while.
They have “brought up the in-home hospice route”. What do they mean? In-home hospice provides very little hands-on care, certainly not “changing, dressing, preparing meals, etc” as you do.
It sounds as though the family member’s understanding of needs and services leaves a lot to be desired. Perhaps they think there are more services than actually exist, and that you should be able to walk away. Find out about available services from this site, and ignore or correct the unhelpful family members.
you need to visit one
the. You can see first hand and hear about the benefits and how they can help your mother.
looking after an elderly person is a huge task
looking after an elderly person with health issues and challenges is Gi-Normus
try not to take it personally
you are doing a Great job
but it is a lot of work and your mother is at a fragile age
I imagine you are giving up a lot /sacrificing a lot as well
If poss I would make enquiries - and if it looks nice then take mother along for a visit
I want you to see somewhere mum I want your views
and after the visit
either someone experienced there or you say mum you need nurses around you all the time
this place is lovely isn’t it
I’d like you to move in here so that you can be cared for 24/7
i have carers coming in several times a day and it’s a lot of work
if I were doing it alone my siblings no doubt would tell me I’m not qualified to and tvat my father needs professional nurses etc
check the place out first
no point talking about it if it doesn’t happen
you could ask Mother’s doctor to come in and do an assessment -say you’re struggling
then you could say doctor says you need nurses around you
my dads 94 next month and full faculties
so you need to gear to your mother - and what your mother wound react to I think
just a thought
best wishes.
Just so you know, in the US facilities that are stand alone hospice are private pay unless the hospice receiver is in very end stages, showing signs of entering the actual dying stage or they have pain, such as a cancer patient sometimes experiences. Pain that can’t be controlled at home with pain meds.
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.