Dementia by itself is awful and difficult and life altering. Early onset dementia is a special hell of its own. My mom retired from work at 58. We fought about it because I didn't understand what she was doing. She didn't have any money saved, she had very little equity in her home. After her and my dad divorced, she had to start all over with nothing. I was afraid she was going to get herself into a financial pickle retiring so early. She didn't have hobbies or friends to do things with, so I was very concerned that she would be bored, broke and have zero stimulation. All she would tell me was she was tired of working. It took years before she was diagnosed with dementia, but looking back on it, I think she was having issues at work and either didn't understand what was happening or she knew very well what was happening and thought quitting would help. By the time things were bad, like her getting lost driving or showing up at my front door really early in the morning while I was getting ready for work thinking we had plans, she had become pretty compliant when I suggested we all get a physical. I also requested that she have a simulated driving test during this physical which she failed miserably. When the doctor told her she shouldn't be driving, I sold her car and had to take on all of her tasks. Truthfully, I don't know what I would have done had she fought me on the issue. I guess I would have called adult protective services. I have friends whose husbands had Lewy Body Dementia and they were violent and putting themselves and their family in danger so they had to be placed in a facility.
I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.
I don't know what it costs in May 2024, but by the time my late husband died in January 2022 it was $266/day. I wrote them a check monthly based on the number of days in the month and until COVID-19 lockdowns always brought it to them on the last business day of the month. During COVID-19 lockdowns, I mailed the check so it arrived by the last business day of the month. In a non-Leap year, that totals $98,952/year, or $8,246 for a 31-day month. It wouldn't surprise me if it is at least $115,000 to $120,000/year now.
My late husband was diagnosed with frontotemporal degeneration at approximately age 56.5 years old. I took early retirement to care for him at home (I was almost two years older than him). That was OK for a while. But while attending an FTD support group (there were simultaneous activities for loved ones w/FTD), the facilitator said, "There's an excellent adult day care program at XYZ Methodist Church, but that's probably too far away for many of you." I said, "I can drive him there in about 10 minutes each way. Give me the information." I enrolled him for 3 days/week, 6 hours/day. When they told me he needed a more intensive level of care, I looked around and found another adult day care. I enrolled him for 3 6-hour days and 2 8-hour days each week. Both were lifelines to us until he needed full-time residential care in a nursing home. Some states, counties, or municipalities might have caregiver grants to defray some of the cost of adult day care; the VA used to have it for veterans (I don't know the requirements because he never served in the military). I highly recommend an adult day care center if one is available and affordable for you, The Alzheimer's Association might be able to help find a support group for you as well. They usually have care for the person w/the Alzheimer's diagnosis. Some of the support groups exist for spouses or children w/early-onset Alzheimer's or another form of dementia. God bless both of you in this challenging journey.
I am and I am just so stressed and overwhelmed with everything. My husband also is incontinent since a prostate surgery 1 1/2 years ago and now with Dementia it's just so overwhelming. I try to be patient with him but at times he just wears me out with not listening to me about things he can do to help himself. He has had Therapists helping with exercising here at home and he cooperates with them, but he just won't help himself with me helping him when they are not here. He needs to get up with his walker and move around more and get himself to the bathroom before he has an accident with his depends overflowing! I'm just at my witts end. I want to be able to care for him at home, but Senior Services and any other agencies are happy to help if you have almost nothing and are on Medicare and or Medicaid, but if you own or have anything they say they can't really help much. It's just not fair!! I want to be able to have help to keep me from getting sick, myself!! I feel so alone!!
I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.
I want to be able to care for him at home, but Senior Services and any other agencies are happy to help if you have almost nothing and are on Medicare and or Medicaid, but if you own or have anything they say they can't really help much. It's just not fair!! I want to be able to have help to keep me from getting sick, myself!! I feel so alone!!