If you are caring for someone with dementia and you feel a loss of your own identity I would say 1) that is not unusual and 2) it is a sign that you NEED some respite time. No one can care for someone with dementia 24/7/365 and retain their identity and sanity. Arrange regular breaks. You are a worthy, unique individual and you need to preserve the valuable person you are!
I took over most things about 3 years ago but it's only become more full time in the last 8 or so months. He doesn't realize I'm his daughter 90% of the time and relates to me almost as a partner; sometimes I'm more than one person if I sit at the desk for a while and return to the sitting area watching TV with him; he'll ask where my friend went that was on the computer. At the end of the day I feel like I've lost my mind and he's been starting to get hostile lately. I've been trying to refrain from hiring "sitters" because there's some money but taxes, insurance, etc., are going to eat that up pretty quickly.
Hiring someone or using an agency that has volunteers or asking for help at your church ... SOMETHING must be done. This is not optional. You have to get some breaks.
He's not on medicaid, still in his own home and I dont have to be there the whole time - I make sure he eats good at least breakfast and good lunch. I take "breaks" (run errands, naps in my car, etc) between and after but far enough from my house that going home isn't an option - I'm already putting 100 miles a day on the car and spending $625/mo in gas. I thought about renting a small apt near there but I can't sell my home, live in his part time and spread myself so thin in a third place. If I had to live there full time I'd, well, I don't know what I'd do but I can't. He won't take a bath for me - my mom died 23 years ago, young, bathed her every day but I just can't bathe my dad. I've been adamant the last 3 years he would never go in a home but I'm coming around to the idea because I can't stay this depressed all the time. I live in filth at my house because I'm so drained at the end of the day - I do watch him from home --- he has never done anything like wandering but I fear it so the house is alarmed, I get text messages any time a door opens and I can view a camera to see if he went out. The hours before he goes to bed (early) he'll open doors 50-60 times - mostly looking for his car which has been gone for 8 mos now. I guess I don't know what agency to even start with but I'm finally accepting I'll have to take him somewhere. I just dread it - no idea how they'll handle him at night -- hospitalizations at night he's had security keeping him in bed because he was determined he was going home tho he was practically gutted with colon surgery and didn't even flinch. I can't get out of my own way.
i had a female friend staying here on workdays so i could work but the dam bed bug discovery screwed that up temporarily. for a while now its just been me and mom and its a coin toss which of us are the craziest. we are eliminating the bugs despite hospice claiming it wasnt possible and nurse f**kspindle is searching for some day activities for mom. mom probably needs some human interaction with other people and the hospice aid and i have some interaction of our own planned. i aint religious or superstitious but theres some real creepy dynamics in play when destiny sends females right to a marooned fellows doorstep.
emerald0562, if Dad has assets or a moderately large monthly income, some of his funds should be spend to give you some time off. If he has no assets and no large income, please look into applying for Medicaid. They have a program designed to keep elderly folks in their homes who would qualify for a nursing home. This would cover supplies, equipment, and some in-home help. It does not provide 24-hour coverage (because at that point a nursing home would be more cost-effective) but they evaluate him and provide services like housecleaning, laundry, and companionship.
I started by calling the Social Services agency in our county. They were the ones who directed me to Medicaid. I thought it was only for nursing homes -- not so!
Thanks Jeannegibbs - his monthly income is about $1400/mo before his utilities and a car payment. He owns his home (less than $100,000 but that's a stretch with all the repairs that are needed). After I pay the property taxes, fed taxes for this year (and next it's gonna be greater next year), and prepay a funeral - he's wiped out in savings. Personally I consider that being in fairly good shape financially if ones are needs are met but not if you factor in the kind of care that's going to be needed. Just wasn't sure what the line is and basically have a hard time asking for help. Thanks - I will start looking into what agency I need to speak to in his county. Thank you SO much - I'm starting to feel desperate.
I've been down the road you are on with the 24/7/365*30months. Exhausted, trying to keep my Mom out of a nursing home. Well, I found that there are excellent, comprehensive services available at the local Atria Life Guidance assisted living facility. By 30 months, I had been ground into a pulp by Mom's anger, dementia, and combative resistance to any health preserving activities (waking up, going to the bathroom regularly, being washed, changing her position to avoid pressure sores...). It ended with Mom biting me on the chest as I tried to hold her in a standing position so she would not slump to the floor, and trying to break my thumbs as I blocked her from running into the street in front of my house. The assisted living facility had three shifts of caregivers, nurses, food service, housekeeping, and administrative staff who did all of the work that I had done alone. Mom has adapted well and is now quite settled, and in a much better mood 95% of the time due to adjustment in her meds by the gerontologist who visits weekly. It is half of the cost of a nursing home, but still expensive. Seek assistance from the office on the aging in your area, or speak with the social worker at the local hospital or rehabilitation facility to find out where you might be able to place your Dad. Then come back to this forum to find out how to recover from extreme caregiving.
Thanks Susan You've been thru the ringer - he's only been really bad the last 8 or 9 months but been under my constant worry and on my toes for 3 years. You dont feel the grinding down for some time but when you finally realize it - it hits you pretty hard how much of your own life you've given up and I don't think they would even want that if they understood.
Is your dad on Medicaid? Is he eligible?
I started by calling the Social Services agency in our county. They were the ones who directed me to Medicaid. I thought it was only for nursing homes -- not so!