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But when it comes to provide support for caregivers it is here through home care agency (govt) for which senior or persons with disabilities has lots of resources. For free, but not really as we paid lots of taxes, higher than in US.
My husband has Parkinson’s as well and for now he gets help with showers, person coming to help with exercises, respite, day programs with taxi picking him up and bringing him home.
Now as his Parkinson’s is advancing he can get 35 hours of help a week strictly for caregiving, we haven’t used that yet.
Day or night, help with morning dressings or nighttime routine.
And if I need him to go to respite stay they will provide one at $70 per night.
He is also approved for transportation i.e. taxis for appointments which he never used.
I am saying this because it is extremely important to have that extra layer of help.
Stress of taking care of person with PD is immense.
I also have several friends to take him for appointments from time to time, I repay them by taking them to lunch or dinner etc.
It really takes a village.
Right now he was diagnosed with Parkinsonism which is worse aka Parkinson plus which could be MSA, PSP, LBD, although dementia was eliminated. But sooner or later meds will not work well anymore as they already are less effective.
Things will get worse, much worse.
When? Nobody knows.
But it is important to have plan A, B and C.
Dianne,
You need to find help, family, friends, maybe local people who can help. Advertise?
I have PT semi retired caregivers who will do several hours here andvthere.
Simple fact is you cannot do it alone.
Also make plan if something happens to you. I have arrangements made through SW if I need to go to hospital my husband will be taken by ambulance as well and either stay in hospital as social admit or home care agency will find him facility.
You can always PM me if you need support.
If your husband is not under hospice care, Medicare would not cover respite care. However, other options such as Medicaid, if your husband is eligible, long term care insurance, if you have a policy, or local programs might provide assistance.
To find out about local respite care programs, you can try the following resources:
Area Agency on Aging. Every community has a local AAA office that can provide information on respite care, home health services and other support for caregivers. You can search for your local office by visiting the Eldercare Locator website at www.eldercare.acl.gov or by calling (800) 677-1116.
Nonprofit Organizations. Groups like the Alzheimer’s Association, if your husband has dementia, or the Family Caregiver Alliance often offer caregiver support, including respite care. They may have local chapters or partnerships with respite programs.
Caregiver Support Programs. Many communities offer caregiver support programs through local hospitals, senior centers, or faith based organizations. A quick internet search for “respite care” in your city or contacting a local senior center might provide leads.
Veterans Affairs (VA). If either the husband or wife is a veteran, the VA offers caregiver support programs, including respite care services, through its VA Caregiver Support Program.
I hope these options give you some peace of mind and a chance to take the break you really deserve.
1. Is your husband a Veteran? If so the VA has programs that will provide caregivers as well as other services. AND the VA will now pay a spouse to care for the Veteran. Also depending on where and when he served he may be eligible for more services, it might help a little or a LOT!
2. Check with your local Senior Service Center. He may qualify for Adult Day Care if that is the case that would free up a few days a week for you to run errands.
3. Depending on where he is in the progression of the Parkinson's he might be Hospice eligible, if that is the case you would be able to request a Volunteer to stay with him while you run errands. AND you would have a Nurse that would come 1 time a week, more often if needed. A CNA that would come 2 times a week to help with shower. And the Nurse would order all the medical supplies and equipment that you would need. The CNA would order all the personal supplies and all supplies, equipment and medications would be delivered. Medicare/Medicaid also would then cover a Respite stay, typically about 1 week each year. this is all covered by Medicaid, Medicare and other insurance
Hospice - another good suggestion.
THANK YOU. Really supportive for this person and many others here.
Gena / Touch Matters
It is better to hire an agency on a pattern, i.e. 8:00 am- noon every Wed morning and you
do your activities then.
I found generally 8am - 2:00 pm M-F could be easily staffed by the agencies as they
had the Mom's who had kids working those hours.
Good luck.
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