Unfortunately I need to work a full time job in order to pay the bills and she is left home all alone. She was a babysitter for 35 years and hasn't paid into the system. For that reason she is not eligible for Medicaid or SSI. That's what they tell me. I can not afford $76 a day for home care for 3 hrs .And when its time for assistant living I don't know what I will do. She has left the shower on all day and the back door wide opened when letting our dog out. I have cameras in and outside to make sure she is moving around the house, but difficult to do while working. Our two kids give little help. I do the dishes, laundry, cooking and cleaning the house. I tell her all the time how did you do all this for so many years. I'm exhausted. I could use all of your advise. Thank you.
Geoff.
Area agency on aging. Elder specialist lawyer (for all the paperwork). Support groups. Local library may have elder help free seminars. This forum. Social workers. Ask at the doctor's offices. Hospitals. If you are a church member-ask around. As places to start getting help.
Start folders of information, resources, medical paperwork-I have about ten-so far. Being organzied to the best of your ability is very important. Lots of agencies, businesses, organizations are going to want information, best to have it at your fingertips when they ask. I learned this during my first stint as a caregiver. If you're in/very close to a city, the department on aging does a lot for the community. In a rural area, much, much harder. I've been in both, and if it weren't so complex to do now, would move my husband to a city-it's that much better, being rural is very hard.
Time to rule out help from the kids now-if it's this way now, don't hope it'll get better. Instead, best to focus on getting help. It can be hard to find, persistance pays.
One of the gentlemen in my caregivers support group just lost his wife this month and he was in year 21 with her suffering from it, as she too had early onset Alzheimer's.
He had to place her 7 years ago in a memory care facility as she just got too much for him to handle at home.
I'm sorry that you're having to deal with this. Look to see if your city has an Adult Daycare Center as they do a wonderful job with dementia folks. You can take her there 5 days a week and up to 8 hours a day. They will feed her breakfast, lunch and a snack and they do great activities to keep the folks busy. Plus they have a spa day where they will shower and wash your loved ones hair.
And if money is an issue for that they do offer some help with that.
And most importantly make sure that you're taking time away for yourself to do the things that you enjoy, as that will keep your spirits lifted up and will help on this very hard and long journey you're on.
And if possible, find a good local caregiver support group as there is nothing better than being able to share with other folks who know exactly what you're going through.
May God bless you and keep you.
Now Medicaid, I think you may want to see an Elder lawyer. I know you want to keep ur wife home as long as possisible but she eventually will need more care than u can give. Medicaid allows for assets to be split. Wifes split going towards her care and when gone, you apply for Medicaid. I think an Elder Lawyer maybe able to help u in other ways too.
We quickly learned that hiring a babysitter for an evening out at $30/hr cost more than the evening out. When we needed a break, we would ask a trusted friend to visit with Mom while we ate, shopped or whatever.
Wishing you all the best in this sad journey. Don’t hesitate to reach out to this forum. It’s a great resource.
https://cahealthadvocates.org/hicap/
I, as others here, are deeply touched and saddened about your situation. We know how difficult it is ... and exhausting. Hopefully, you will get some needed support with the responses provided here.
DO consider asking for volunteer support - through a church or even high school / college. Students often need work recommendations... references... before they actually work. I wouldn't give them too much responsibility other than perhaps watching your wife, doing laundry, etc.
Gena / Touch Matters
We are older and don't have children so I was able to convince my husband to move into assisted living so I could see his house and we could at least pay for him to live a few more years. After that I have no idea what we'll do. His sons are both REALLY rich -- their mother and aunt left them a family fortune. They are not interested in helping at all except to criticize me brutally.
The main reason I'm writing this, since it's not any kind of solution, is to send my most sincere sympathy. I have a therapist who specializes in loss, grief and stress, and that helps a bit. But your wife is much younger than my husband and dementia can go on for years. I do so hope friends on this forum can help. At least I can help by telling you that you are not alone. I am so sorry for what you are going through. Please keep us all posted.
I am very sorry for this difficult situation. I think a good place to start is her primary doctor. Ask about medications to help with confusion and decline. Ask about a social worker to help you navigate what your wife is eligible for. Ask repeatedly and be sure to contact your states Dept. of Elder Affairs. Any help at this point would be huge.
No friends or family even for scheduled short visits? Contact a church near you for volunteer visits.
As for cleaning and cooking keep it basic & lower your standards until you can get some help.
Keeping you in my prayers.
Have you contacted social services for your county to see if she qualifies for in-home assistance through an Elder Waiver?
In most states Medicaid pays for LTC only. LTC needs to be medically assessed and usually means the person is wheel-chair bound or bedridden. A few states' Medicaid pays for AL (and not sure about MC) but most do not.
A "least bad" option would be to resign as her PoA or legal guardian and allow the county to acquire guardianship instead. In this scenario, the court-appointed guardian/s will be responsible for her housing and care, not you. You may want to consider talking to a social worker or elder law attorney about this. I'm sure the thought of this is painful, but it may be the only viable option for both of you given the information you provided in your post. May you find a solution and gain peace in your heart on this journey!
So very sorry you are facing this difficult situation. Early Alzheimer's can last for years or it can move rapidly but you need some assistance now! If you burn out (as many caregivers do, who will help your wife then? I agree that you should check with your wife's physician and make sure that he is aware her actions and the current situation. Having said that.... there are physicians and there are physicians; don't be afraid to check with neighbors and see if anyone can recommend a really good geriatric physician.
If she has a documented physician's dx of Alzheimer's I would apply for SSI now. It can be a complex application and takes forever. If they reject it, apply again. The county's office on aging may be able to give you some guidance on various programs (federal and state) that may be available.
In our state, there are relatively few standalone ALs (assisted living) or MCs (memory care) that take Medicaid. The few that do have fairly long waiting list and generally reserve their limited beds for their private paying residents when they run out of funds. Many LTCs (long term care) facilities have specialized MC units however and some of them are secured to prevent wandering. Those units are staffed by nurses and CNAs who have received special training on how to care for patients with memory care issues. Again you may want to talk to the Office on Aging for more information.
An even better bet re: Medicaid (eligibility is based on income but there is a split for married couples) is to see if you can get a free 15 min consultation with a certified eldercare attorney; the attorney can answer questions about eligibility and how assets (house, auto, etc) will be split when applying for Medicaid. Medicaid is not looking to leave the community spouse homeless contrary to popular belief.
Please keep us updated and let me know if you need any more information.
Contact Alzheimer’s Association and see if they can help you figure out your options. Next, Social Security said my husband wasn’t eligible for disability because he hadn’t worked enough recently. The lawyers said there was nothing I could do. Alzheimer’s Association to me to file a Compassionate Allowance application because there is an exception for dementias. I did and he received benefits no problems. You will need to be her representative payee due to her condition. My husband gets $1,418 per month so that should help.
Next, I would educate the kids about her condition and ask them to commit to whatever help they can provide. Dementia/Alzheimer’s is hard for people to conceptualize because they can’t easily see it. They will have to learn what the disease is. There are movies about people who went through this on Amazon. Search “Alzheimer’s movies”.
Finally, take care of yourself. Research the illness so you can deal with it better. Love her while you can and know that in the end, it will be okay.
Best
Also, since she is now 62 she may be able to apply for early retirement. But, the problem may be that she did not pay into the system as you said. However, disability is different and she does not need have paid into the system.
- try to make this as simple as possible to navigate - such as, forget about using regular plates to then have to wash - and instead, just use plastic disposable plates (or paper plates) and disposable cutlery. It's worth it.
- regarding laundry, you can google dry cleaners in your local area and most of them offer bunk laundry - it's very inexpensive and sometimes, they can pick up and deliver. I arranged this for my elderly parents and every other week, it's all done for them - also comes folded. They just leave out their laundry bag and it's taken care of. Their laundry costs about $15 to take care of - for a huge, heavy laundry bag.
- cooking - you can order online instead of grocery shopping - Amazon Fresh or WholeFoods - try to get simple pre-made meals that just require microwaving - (such as pizza, frozen pasta meals - or cold cuts, etc) or a food service for meals.
- house cleaning - if you can get a housekeeper every 2- 3 weeks just to tidy up, it will help keep things organized.
For now, until you can get her ss benefits and anything else others have suggested, you may want to look into adult day care options to keep her occupied.
I think you wold benefit a lot from a support group for Alzheimers as well to keep you connected with others. Wishing you all the very best.
If you and your wife have been married at least 10 years when she turns 65 she will be eligible for Medicare because of the marriage.
Your wife should now be eligible for Social Security Disability.
Please contact your social Security Office and talk to someone.
Please contact your local Senior Service Center and see if they are aware of any services or programs she would be eligible for.
You could also contact the Area Agency on Aging and again ask what services are available.
I honestly do not think it is safe for you to leave your wife at home alone.
If you have been members of a Church or other religious organization they may have a Volunteer program that might offer some help.
A call to the Alzheimer's Association might help they may have a list of services and Support Groups in your area.
this is the 24/7 help line number 1-800-272-3900
For a caregiver contact your local Community college and ask if they have a Nursing program or a CNA Certification program. Anyone that has just completed classes might want to work privately rather than in a facility.
I would still do back ground checks and you should pay a fair rate but it might be less than if you went through an agency.
And even though it is more paperwork do not "pay under the table" as you now see having the income declared and reported is important.
I think your wife should qualify for social security disability under your social security benefit. There may be other things that she qualifies for as well. It is best to call an elder lawyer and see if you can get a free consultation. They know all of the tricks.