I work Full-time and he is getting to the point where he always needs someone around to help him. He can still bath himself and get dressed for the most part. I help his find his clothes, and help him put on socks/shoes. But, for the most part I do everything else. Get him drinks, food, whatever else he needs. Set up his meds, and make sure he takes them. Run him to the Doctor or to/from Dialysis.
It is getting to be too much for me alone. I need some help. I just don't know where to start.
If your husband is income eligible for Medicaid, you also have the option to be paid as his caregiver, providing assistance with his ADLs. Find out how many hours you could be paid. You might be able to quit your job to stay home and care for him yourself. This is the decision I made 10 years ago. My husband could not be left alone, and I realized that it would be too stressful for me to count on someone coming to my house at 6 am every day, and staying 10 hours to accommodate my 8 hour work day plus lunch break plus travel time, and what if the person didn't show up? If they were sick or had car trouble, or were simply unreliable? Then, my employment would be jeopardized, AND I would have to work all day, care for him all night, only to get up early and do it all again the next day.
For me, leaving my job to stay home with him was the right decision. The pay as a caregiver made up for my lost income, and I now work full time with benefits for a home care agency.
Call Home care agencies in your area. It can be expensive. If your husband is eligible for Medicaid, that will help to pay for home care for assistance with ADL's - Activities of Daily Living. Then, ask the case manager for help finding a home care provider which is contracted with Medicaid.
A home care attendant can help him with dressing, mobility, getting food, they can not "give" medications, but they can "remind him" to take medications.
Use a weekly pill organizer which you can set up once each week, then he just needs to take the medication for the appropriate time and day.
If he is on hospice, a nurse will come to the house weekly, and they will provide all his medications, and will help with bathing, if needed.
Your home care attendant may or may not be able to transport him to doctor appointments, but you can find medical transport services which will do just that. Some organizations even offer volunteers to drive to doctor appointments.
Hospice will not offer any life saving treatment, but will provide medications to make him as comfortable as possible with his chronic condition(s).
Jackie, you mentioned contacting AoA. Here is what they will likely tell you, and won’t.
If you are thinking of quitting with the state then paying you for 40 hours, a lot of them don’t accept spouses as evidenced here. https://www.consumerdirectwa.com/ It is very common for ihss workers to be paid at the state minimum wage, and there are no benefits.
If your husband is dependent on your salary or benefits, you should absolutely not quit, but understand that there won’t be free/volunteer aide assistance coming from AoA or 211. The going rate for indies here in the Bay Area is 25 an hour. Agencies who pay caregivers about that will charge at least 40 to start and more if medication management is involved.
At 40 hours a week, thats a thousand bucks. $52k a year, for an Indy who could sue you over workers comp vs 83k+ for an agency aide where that’s all covered.
If 1967 is your birth year, you definitely should be concerned that dh’s multiple chronic conditions do not overwhelm your ability to retire. Have you had a discussion about this?
Then you need to hire someone to constantly attend him for 40 hours a week, though your specific task list sounds like things many people could do without aides. Food and drinks can be stocked daily on a table or in a mini fridge in his room. Electronic med dispensaries plus alarm reminders make it easy to not forget. Most counties have door to door free paratransit originally designed around getting seniors to their doctors and long term treatments like dialysis.
If he still needs an aide, it’s important to flesh out your list and his of what you expect from paying for 40 hours a week.
Perhaps you already know this…… ESRD is a special disease category for early MediCARE eligibility. So lots are very young, like in their 30’s and 40’s. Most are “duals” so on Medicare and Medicaid. It is a significant #. There will be a facility somewhere that accepts residents who are ESRD and knows how to do the type of care plan they need and bill to Medicare & Medicaid and able to get them eligible for LTC Medicaid.
You may want to start with the nonprofit Family Caregiver Alliance which has lots of resources from support groups to training to a questionnaire that reveals what programs are best suited to your specifics. caregiver.org
Take care of yourself and hubby
If there are no assets you are down to checking with your doc, you supplemental insurance, and social workers in your hospital system. As hubby is attending dialysis center three days a week likely this is time for checking there to begin with.
Two major systems are failing here. Heart and kidneys. Add the COPD and there are three systems. At some point there may be more care needed than you cab do as one person. That would means placement.
I am so sorry. You must feel so overwhelmed. 24/7 care of this type isn't sustainable for one person.
I am finding out rapidly that he needs more care than I can provide and work too.
I am feeling very overwhelmed right now. Trying to make sure he has everything he needs...Meds, Dr Appts...everyday things. And trying to balance that with a full time job, isn't working anymore.
I will check with his dialysis team and our local area Agency on Aging to see if they have any resources.
Thanks again.