Gotta work, DH can't be alone but not ready to be placed, holy Cr. what do I do?
I work part-time because we can't make it without the extra income. Both of us are on SS. I've been able to leave my DH for 6-7 hour stretch for the last year an a half but that's coming to an end. He is good when I'm home and can take care of him and make sure he's safe, but in the past month I am realizing that he's not going to be able to be on his own while I'm at work for much longer he has seriously bad sight issues along with AD. Is there help financially out there? I've spoken with Hospice and he is not a candidate for any program - I won't receive any type of funding in my state if I go on Family Leave. He's not progressed enough to be placed in a memory care facility yet. I only get answers that are open ended like… You could "try" this or "maybe" this will help. WHO helps people like me? I live in FLORIDA and I have to take care of him and I WILL have to quit work to do it. Looking for a definitive answer please.
Comments
-
Hi jbrocks,
This is the BIG dilemma and is already a crisis in our nation.
I went through this a few years ago, when my dear wife could no longer be left at home alone while I worked. It was a scary transition, and there were no easy answers.
Through much trial and error, I settled into a routine of adult daycare and working from home whenever possible. You may have to make some hard decisions, but I encourage you to have an open mind and try to piece together a solution.
Get a paper and pencil and do some brainstorming of ideas. Call family and friends. Call the Alzheimer's Association hotline at 1-800-272-3900. Re-work your budget. Talk to your boss and let them know what is going on; they may be more supportive than you expect. If something does not work, try something else.
This is a red-alert situation and I am glad that you recognize it.
Now for some practical advice: You may need to take some time off work to explore adult daycares in your area. Fill out the forms and see if they have financial aid or grants available. You mention that you are both on social security, so that gives you some reliable income to budget from. Adult daycares are pretty good about finding a solution for you. I hope you are in an area where there are multiple daycares around you.
Meanwhile, begin to dementia-proof your home: Remove the burner controls from the stovetop. Find out if your appliances have child-lock codes you can use. Remove tripping hazards. Remove or hide knives and other dangerous items. Install cameras or alarms on/around doors. Be sure stair railings are secure. Technology is your friend now, and much cheaper than memory care. Ask your doctor if there is an organization that can help train you on caregiving and possibly visit your home to evaluate safety for your loved one.
Take a deep breath and try to take one thing at a time. I have been through this part. and it is a MONSTER. But you can do this! You are the boss now.
Love Bill_2001
11 -
Great advice from Bill.
0 -
Yes, I keep forgetting… I'm the boss now. Great advice, Bill, I was thinking of taking a week or two off so I could concentrate on setting things up better for him. I work for a company that will allow that. I am looking for work at home as well. Time is a big issue, and more to the story, we spent 2024 getting my father's affairs in order as he is in an ALF soon to be in a nursing home. Every waking hour or time off that I had was getting my father's house ready to sell and cleaning it out (a hoard) I feel robbed of the time I could have spent getting my own sh.. together and spending that time with my DH. It took a toll on him in a very big way. I have my sister who really has taken the helm on Dad's affairs, yet I still had to share in responsibilities and decisions. She also has a load to deal with. She works full-time and her son is a 37 YO mess, (drugs, jail) she's got a lot on her shoulders.
7 -
Bill gave excellent advice. I work full time and it became clear that DH couldn't be alone all day. I found a day care that I could afford if needed. We haven't used it yet. I have cameras in the house and a companion from 9-3 each day. We found him through a church friend. He is a blessing because he is reliable and affordable. DH's family rotates one day a week. I can work from home at times if needed. Do take time to contact services and see what is available. My DH doesn't like the companion but so far so good. Don't be afraid to ask for help.
2 -
I only make $13.50 p/h and barely making our bills right now… but just making it. I can't take on any more payments of any kind right now.
3 -
Try the area agency on aging.
3 -
Your story brings tears to my eyes.
0 -
Check with council on aging
2 -
I'm sorry.. .not trying to make ya'll sad - it is sad and I've cried a lot. But I need to blow through the tears and get my A in gear and take of him and "us". Thank you, I appreciate any feedback. 🤗
3 -
I am in the same situation accept I mostly work from home and have had to pass on business because I couldn't leave him alone. I am unable to get any kind of assistance because I am not yet retired and have retirement accounts which count as assets. Our income is very low but we can get by for a time on savings and do not have any debt. Caring for DH gets more difficult all the time. He can be very abusive.
3 -
So sorry you are at this point. These decisions are difficult. Have you looked into Medicaid? If you meet income requirements in Florida he can get both Medicare and Medicaid. Medicaid pays where Medicare doesn’t. You are allowed one house and one car and cannot have more than a certain amount of assets.
0 -
Florida Elder Affairs. Your county may have one too. Ask your husbands doctor if they have a case manager that can help you. I’m in Florida helping my step dad after a stroke and his case manager has really helped. https://elderaffairs.org
0 -
0
-
Thank you. I'll look into that.
0 -
0
-
You may also see if your state offers respite vouchers, which would offer some financial relief for a sitter. The state I reside in (OK) they offer $300.00 every quarter I know it's not much but, every little bit helps and may help with your work situation some. The vouchers are not income based, but is offered to caregivers in our situations. I've been down the road your traveling just like many of us and it can be very difficult. Pace yourself, take on one thing at a time (which Bill 2001 has already stated). You'll make it I promise just hang tough stick with it.
2 -
Adult day care was great for us. Mom started with 3 days a week and we increased it to 5. It was a perfect solution when she was in that "in between" stage, not ready for memory care but unable to be left alone or entertain herself. I don't know about FL, but in MN there is financial assistance for lower income folks for adult day programs. It may be through their medicaid program. The above resources, like a county council on aging or the Alz hotline, would probably be able to tell you if there is financial assistance for it.
1
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 487 Living With Alzheimer's or Dementia
- 243 I Am Living With Alzheimer's or Other Dementia
- 244 I Am Living With Younger Onset Alzheimer's
- 14.5K Supporting Someone Living with Dementia
- 5.3K I Am a Caregiver (General Topics)
- 7K Caring For a Spouse or Partner
- 2K Caring for a Parent
- 165 Caring Long Distance
- 110 Supporting Those Who Have Lost Someone
- 11 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help