I have no help. She is on Medicare and I cannot afford a nursing home. I am at a point where I don't know what to do for her. If I bring her to hospital they will just release her. Please, any advice?
Cindy I'm sorry you are alone. My Mom is almost 101 and has dementia, is bedridden, cannot hear or see well, along with CHF and a few other health issues and although I have siblings they refuse to do anything. They are wealthy and I'm not. Sometimes feel like I am losing my mind and do know I am losing my health both physically and mentally. Friends have given up on me being able to do anything so they have left and my social life has been zero for a long time. Have never cried so much in my life as in this past week. Have never done so many laundries and made a bed so many times nor cooked so many meals that go mostly uneaten. I understand the "don't know what to do". I take her to the Dr and they say "she's old, this is all to be expected" with no suggestions of what to do. They gave me pills to lower her agitation and they make her MORE agitated. If I take her to the hospital they will admit her, she will go through hell again and be worse when she comes home. And so I suffer and wait. This next week for the first time in 20+ years I have someone coming in to give me a 4 hour break once a week. I don't even have the energy to think of what to do in those 4 hours. So my dear, I have nothing to offer but "I understand and know how tough it is when you do 24/7 care and are worn to a frazzle". Can you find any good person who would come and give you a break once a week? As I haven't yet experienced it do not know how much of a help it will be, but right now it is a light in a very dark tunnel. Thinking of you!
So sorry you are going thru this also. Thank you for your very kind words. Its so sad when people abandon you and your watching your parent waste away. This disease is brutal. A once active vibrant women reduced to this. Never an unkind word for anyone. This condition has taken everything away from her. I try to stay strong. Please try to do same.
If you are unable to care for your mother at home, please take her to the ER. This could be something as relatively easy to fix at a Urinary Tract Infections, or could be a reaction to medication or a need to medication change. If there is no change do not take your mother back into care in your home if you feel unsafe doing so. Ask for the social services to intervene and seek placement for your mother. They can often do the financial circumnavigation much more quickly than you can. And will see to some safe placement for your Mom. It may not be the Hilton, but if you are unable to safely care for your Mom do not accept her back home into your care. You will have to be strong enough to withstand manipulation because basically they will do just a out anything to get her out and back with you including promises they will NOT keep for instance "We can make this work" (they can't) and "We will get you help". They won't. Or it will not be enough.
This is very true! They will promise you the moon to get you to take a person with dementia back home. The hospital pulled that on me with my husband earlier this year when he fell out of bed, cracked a vertebrae in his back & could barely move. Along with this came incontinence & they encouraged him to just pee in the bed so they wouldn’t have to change diapers. Then they convinced me to take him home with NO HELP (I’m alone with no family or friends) just shy of the 3 days required to get Medicare Part A to cover paying for him to go to a rehab facility so I could get a freaking BREAK.
They told me that someone would call on Monday because it was the weekend. DAYS later, they said a facility wouldn’t be covered & started sending these two-bit “therapists” from an agency, who clearly had no experience dealing with dementia, to try & get him to do exercises. Half the time they wouldn’t even show up; the others they’d be late, so I’d be late for work.
I’d call & call to speak to someone in charge and get nothing but indifference. I ended up having to hire a private care person & fill the house with cameras to avoid being robbed blind or have my husband being mistreated. They want $20+/hour, and It’s hard to find anyone reliable. I just had the last one give notice that she’s leaving, right before Christmas.
If you have a dime to your name, you can’t seem to get any help. I got a social worker to come just once, and she took one look at my house & said we’re not going to qualify for anything, assistance-wise. The plan seems to be to get every dime out of the person and their family until they are broke, and THEN you can get on a list to wait for public assistance. I actually had a service tell me to cash out MY retirement from work to pay for a private care facility for my husband, because his pension and social security wouldn’t be enough. $7,000+/month for private care facility that smells, and the residents live in glorified jail cells. I just have no idea what to do except pray for a quick end.
Have you investigated Medicaid for your mother? Medicare is not the answer. Take her to the ER and make it clear that you cannot take her back home. Have social services find a nursing home for her and apply for Medicaid.
Don’t listen to demands of mother when you take her to hospital to take her back home. Tell Dr in ER you want & need help...you have terrible back pains/headaches from caring for her & unable to help her anymore. Also you are unable to guarantee her safety in the house. Speak to Social Worker at hospital. Don’t let them discharge her to home. Good luck...& Hugs 🤗
Unfortunately, the hard truth is that no medication really keeps dementia “in check”. You need to determine IF you are financially responsible for her care. If she has any funds or real estate, they will need to be liquidated to pay for her care if she needs residential placement. Why were you considering taking her to a hospital? Do you consider her to be in need of full time care? Who wrote the prescription for the medication? Will that person give you a written statement about her cognitive status? If she is unable to take care of her personal needs/safety, you will need to find out what kinds of services are available for her in your area.
This is very tough to consider when becoming the caregiver of a dependent adult. If you provide some more information you will find that many will provide general information to help you get started.
Donepezil, at best, decreases the slope of the decline for a while but with a sharp fall off at the end. So whether someone is on it or not, the endpoint is the same.
As others have said, if she can't be cared for, get her to an ER and then don't accept responsibility for release. They'll have to deal with it. Hopefully there aren't any issues with getting on medicaid.
I am so sorry that your mom has dementia - a sad miserable disease for sure. And I am sorry you are alone to care for her. Does your county have a Commission on Aging? Ours has 2 programs currently - Respite & FAIR. Does your mother qualify for Home Health? What about Palliative Care Hospice or Hospice? Does she have any other type of insurance (some have purchased plans that will cover caregiver cost)? And finally is hiring private care an option (even if it be for a few hours)? You will need to have some down time for sure. Don’t be afraid to reach out and ask for help, talk to others who have been or are going through this, talk to her doctor & educate yourself on this disease. My mom developed a UTI a few months back which seemed to be the start of a severe downward decline-blood clots, hospitalization, sent home on Home Health, then Palliative Care Hospice and now Hospice. She, per Hospice assessment, is in the final stages and I have to admit that I regret my fears and apprehensions during those previous stages because as each stage passes her mental & physical abilities slip away more and more. Please reach out to the facilities mentioned on this site - you and your mom deserve all the help you can find! Love & Prayers!
To give yourself a break is there an Adult Day Care near you? If so that is a great option it will give her a place to go and you will have a bit of time for yourself when you don't have to worry about her. Would she qualify for Medicaid? If so that might be an option and then get her on a list for a Memory Care facility that accepts Medicaid. (some Memory Care facilities also have Adult Day care) If she is hospitalized you could talk to a Social Worker there and tell them that you are at the end of your rope, you can not safely care for her, you are concerned about her safety as well as yours. And by hospitalized I do not mean you bring her in for no reason..as they will not hospitalize her it would be an "observation". By the way the dementia medications like donepezil (Aricept) do not work forever.
I would tell you to contact her doctor and see if she would be eligible for hospice. This was our only resource because Medicare will only pay for home help for a while. With hospice, they can renew it if the person even loses one pound of weight, or if the dementia seems to be getting worse. They can help you get her into a nursing home also, if it comes to that.
My 89 year old mother has lived with me for 10 years. I recently, with her applied for a Medicaid Waiver for her. Then looked around at Assisted Living facilities. Contact your local Area Agency on Ageing and they should be able to help you with the process. In Ohio she would need to pretty much have no assets and keep her bank account under $2000.00. My mother moved out before Christmas and loves it. Good Luck
They told me that someone would call on Monday because it was the weekend. DAYS later, they said a facility wouldn’t be covered & started sending these two-bit “therapists” from an agency, who clearly had no experience dealing with dementia, to try & get him to do exercises. Half the time they wouldn’t even show up; the others they’d be late, so I’d be late for work.
I’d call & call to speak to someone in charge and get nothing but indifference. I ended up having to hire a private care person & fill the house with cameras to avoid being robbed blind or have my husband being mistreated. They want $20+/hour, and It’s hard to find anyone reliable. I just had the last one give notice that she’s leaving, right before Christmas.
If you have a dime to your name, you can’t seem to get any help. I got a social worker to come just once, and she took one look at my house & said we’re not going to qualify for anything, assistance-wise. The plan seems to be to get every dime out of the person and their family until they are broke, and THEN you can get on a list to wait for public assistance. I actually had a service tell me to cash out MY retirement from work to pay for a private care facility for my husband, because his pension and social security wouldn’t be enough. $7,000+/month for private care facility that smells, and the residents live in glorified jail cells. I just have no idea what to do except pray for a quick end.
Good luck...& Hugs 🤗
You need to determine IF you are financially responsible for her care.
If she has any funds or real estate, they will need to be liquidated to pay for her care if she needs residential placement.
Why were you considering taking her to a hospital?
Do you consider her to be in need of full time care?
Who wrote the prescription for the medication? Will that person give you a written statement about her cognitive status?
If she is unable to take care of her personal needs/safety, you will need to find out what kinds of services are available for her in your area.
This is very tough to consider when becoming the caregiver of a dependent adult. If you provide some more information you will find that many will provide general information to help you get started.
As others have said, if she can't be cared for, get her to an ER and then don't accept responsibility for release. They'll have to deal with it. Hopefully there aren't any issues with getting on medicaid.
Would she qualify for Medicaid? If so that might be an option and then get her on a list for a Memory Care facility that accepts Medicaid. (some Memory Care facilities also have Adult Day care)
If she is hospitalized you could talk to a Social Worker there and tell them that you are at the end of your rope, you can not safely care for her, you are concerned about her safety as well as yours. And by hospitalized I do not mean you bring her in for no reason..as they will not hospitalize her it would be an "observation".
By the way the dementia medications like donepezil (Aricept) do not work forever.
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