Question for caregiver

[Prayingforacure]

What source do you use for support in caring for your love one. Please message me if you want, it is really difficult these days, was told to call hospice but I just can't do it. i so very much appreciate response. Thank you.

[wifeofparky]

Hospice care does not mean death is imminent. Hospice provides wonderful care for your loved one allowing you to take care of yourself. Remember as caregivers we cannot ignore our needs or health. Sometimes we are all they have. Hospice provided aides to give me a break and their doctors came to the house so I didn't have to transport him around.

[Prayingforacure in reply to wifeofparky]

Thank you for replying, hospice in our area does not provide aids to give one a brief break. I am aware what they do though in our area, not all states work hospice the same.thanks again.

[Major1 in reply to Prayingforacure]

Do you have any elder care businesses in your area that can help you find a sitter or helper? My husband has had Parkinsons for 21 years now and if it weren't for his helper, I would not be able to manage. At first, I felt in hiring someone that I was failing in my "job," but it has truly changed the atmosphere in our house. We do not fault Moms of young children for getting a sitter so that they can have some time to do things that they need and want to do. Why should we feel guilty for doing the same for our adult loved ones?

[quirkyme]

former chaplain in a hospice here. In the US the Medicare criteria is that you are judged to have 6 months of less to live. That doesn't mean you don't get an extension. Some people go on and off it. I know one woman who is doing well 2 years later. With that said, I would try to find out about hospice, palliative care (more symptom management). Is there a VNA (Visiting Nurse Agency or other agency that can provide help. My 90 year old mother gets care through the county she lives in, someone to help her bathe and do her laundry (she refuses to go into nursing home). If there is an elder care worker or social worker in your town or city, call them and get connected.

I agree with Major, you need respite care for your own sanity. I co-lead a support group for PD patients and caregivers and there's one woman whose husband is quite advanced. She has a combo of family members, and VNA help and most months she makes it to the PD meeting. We have a caregiver support session of an hour every 2 months and I'm always daunted and in awe of what caregivers, all women in this group, have to do.

[margie]

What about a group called RESPITE CARE ? This used to refer to the act of leaving a loved one with special needs in the temporary care of another party. Most areas have this.

[Prayingforacure in reply to margie]

The only way to get respite care in our area is for hubby to be temporary in a nursing home, I refuse to do that. I am looking into getting someone to come in to help me.

[jillannf6 in reply to Prayingforacure]

Hi praying fora cure

i know how you feel but i know that i will have to go into a nursing home at some point and accept that/

it is v difficult dealign iwth this PSP which i have and it s easy for me to accept it i think as i have always been that sort of person when it comes to illness (accepting and not being

judgmental)

i do not know if my practical view of life is good or bad just hat ti have learned every thing about the illness which i can and i do not blame my partner for not wanting to ever talk about these sort of things but he gets v upset when i want to talk about them( like funeral plans etc) and i end up doing things myself

but i have had a bit of a vent and nee dot hav e amy breakfast now]lol JILL

and a