My 78 yr old mom has Alzheimer's. She is very difficult to deal with. Refuses to wear her depends and wets the bed and takes the bath pads off now. What to do?

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My 78 yr old mom has Alzheimer's. She is very difficult to deal with. Refuses to wear her depends and wets the bed and takes the bath pads off now. What to do?

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What can I do before she kills me. She don't qualify for anything with the little $2900 month retirement she get. To put her in a facility. Me and my sister left she don't help much.. 3 times in the last 6 yrs she took her for 7 days to her house. 21 days in 6yrs. I hired my mom sister to help Mr with her but she stressed her out after a yrs and she never returned. My 24 yrs son help some but he really don't want to but have no choice since he still wants to live in my house. I'm really getting burned out now. My mom is very difficult to deal with everything is a battle. She don't like to shower its hard to get her to do anything she don't want to do. So I would only go in her room to feed her or put things in her refrigerator that she like. And clean her bathroom. Now the last month or do she has wet the bed. When she soaking wet she must of the time refuse to shower. The medication they prescribed ain't working. Sleep pattern horrible. Now this wetting the bed daily and me having to wash daily to prevent my home from smelling like a convalescent is becoming the final straw. She is breaking me down my health is not good. I live chronic pain from a spinal fusion in 2009. The stress if feel when I hit the door and smell the piss😡 and she lay there talking mess refuse to get up. Multiple times she has to be told to get up. Sometimes she do get up most she don't
I need some suggestions who to deal with this condition. My tolerance is wearing thin.

Alzheimer's & Dementia Burnout Family Caregiver Urinary Incontinence

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Time for a new plan..?

If Mother's care needs are too high for living in your home, then they are too high. Speak to her Doctor or obtain a referral for a Social Worker service to find out what options are available.

Either for more help at home, or what type of care home is suitable/available/affordable.

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So the county say that her $3000 well her $2800 6 yrs ago was to much for 1 person. So when I did have help for her care from her sister I had to pay out of pocket. She don't qualify for IHSS.

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The fastest way is to call 911 and tell them she’s in an altered state, slurring her words and you notice there’s droopy ness on one side of her face. They’ll transport her faster than u could say the word “stroke.”

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Not if her vital signs are good, they won't. Tried this with my aunt.

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I get that things creep up, get harder & harder. Then one day you just snap & say I need to change this today. But this has been creeping up for 6 years.

So keep up the research until the new pathway is found.

Call your council, Area of Aging, the Doctor, a helpline, lifeline even. Find out how to obtain an Aged Care Needs Assessment.

Find out what the real options are. For in-home care, for assisted living or long term care. Call your local Care Homes & ask the types of care they offer & the costs.

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Her Kaiser Social worker has given me all kinds of literature and resources but she has to pay and not enough income for nothing.

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Contact social services for your county and ask for an in-home assessment. She may qualify for some services. Then you can have a conversation with a social worker about any possible options.

The laundry thing...ugh. If she still has any cloth undies, get rid of them and replace with only disposable pull-ups. Get a waterproof matress cover, have her sleep on a chuck. If she takes off her disposable undies she may need to wear an anti-strip jumpsuit.

I'm so sorry you're in this situation. Are you her PoA?

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Poa only with the bank. She don't have anything but her retirement income of $3000 monthly. Spoke with the county social worker was told her income was to high. She was a social worker in the memory clinic at kaiser also said my mom's want qualify for anything because she don't qualify for Medicare because her 40+ yrs working for the University of California didn't take it out. I'm disabled on ssdi. I have a fixed income and have my own obligations. Will not sale my home to pay for my mom's care. So I'm stuck right now. Looking for ways to try to care for her myself. I would think that kaiser would have a pill combination that would be effective. No is working. Depakote, Trazodone and Zoloft no effect. Her mom's had it as well. My Aunt to care of their mom until she died. My aunt said she was nothing like my mom. She listened and wasn't mean. My mom also has diabetes and stage 4 kidney disease she want be able to go to dialysis due to confusion being a Alzheimer patient. So she been placed in palliative care from the Hospice.

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You are correct putting it the way you did--"before she kills me", because in all honesty this caregiving may do just that. What then for your Mom? She will not even have your visits to comfort her.

As to Sister no more need be said. She has made her own choices; she doesn't wish to do caregiving. I would not, either.

You mention your mother has just under 3,000 per month. That would go to the care facility in its entirety. Then there would be funds likely from Medicaid to bring up to the amount needed/required for her care.

The way to see how to do this is to arrange an hour of time with an elder law attorney. IF you are POA and you should be, the visit to an expert is paid for by your mother. I also hope you got a care contract in place when she was still competent to help make one, so that you have shared living expenses.

It is clearly time to figure out just how to arrange placement. You will need help figuring it out, but I do believe you know it is time. I wish you the best of luck.

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Let me tell you, if you can see the pee when you walk in the door, it’s 1000 times worse smell for someone who doesn’t live there.

Its time for her to be in a home and you need to figure out who to call to get her there.

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Her retirement income is to high to qualify for medi-cal. Her University of California job didn't take out Medicare. Nothing in her income range. Most care facilities want $5000 plus per month.

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See if your state offers something like a Miller Trust to "offload" your Mom's extra income so that she can qualify for Medicaid. Consider consulting with a Medicaid Planner for your home state.

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"So she been placed in palliative care from the Hospice".

Speak to Hospice Case Manager about options.

Your Mother needs care. Fact.
But there is no law stating you have to provide this care with your own hands, in your own home (or hers), for as long as she needs, despite the burdon load to you.
You are not enslaved.

Keep up the search for alternatives.

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Thanks

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Just from reading this, I began to cringe. It is time for hospice care in a facility. You are at the end of your caring cycle. You love your mom and she loves you, but it comes a time when you will have to let go. Hope is a human condition when there is nothing else to fall back on. I hope that one day this situation will improve, and so on. It lifts our spirits for awhile until something else comes along and knocks us back into reality that this situation isn't going to change or it is actually worse.

When it happens and we end up in this state, it is time to make a decision to save ourselves at this point.

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i don’t know if you can get medicine that would calm her a little. My husband is 91. He is on donepezil which turned from angry to much sweeter. I still have the stubbornness and always I relax and back off for a few minutes. you name it taking his pants off, his jacket,etc. changing his depends. i got a lift chair whic helps my back.
You need a relief even for two hours. Call Alzeimers assoc. there are volunteers who can come and sit for awhile. If you can someone to the laundry once a week helps. I found if I could get someone to do laundry, change bed put kitchen in order , I could be a better caregiver. I found someone on facebook for 20. an hour. and get the laundry, dishes, bed changed floors vacuumed and mopped, it held a lot. Agencies charge a lot, find someone by talking to friends.
Say a lot of prayers, Jesus has helped me, now i need to figure out how to get a good nights sleep. God bless you, it is difficult no matter.
We just talked to doctor about calming him down at night, she said no caffeine or sweets after noon. she said you get melatonin over the counter 6mg to 10mg
extended release. my husband can’t do extended release he chews and would spit it out at me. So I am going with melatonin with 6mg i think if I can get liquid or chewable he should be good. Wish you luck, I am in Webster Ny.

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I’ve have my 91 yr old father on Generic lunesta 3mg (max dosage) to sleep at night with Mirtazipine (anti depressant but helps with sleeping). Melatonin unfortunately is just too light.
Good luck and sending you good thoughts to get a good nights sleep.

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Dealing with something similar with my 76 y/o mother. We moved her from Cali where we're from to Ohio where I live and am a professor. Found out last year that mom was stage 4 metastatic colon cancer and last week that she has alzheimer's. She has been hiding this from us, but had never been to the doctor. Tired, not eating, etc. When I got her here, I got her all the appointments and she had surgery last May to remove the huge mass in her colon. She has an ostomy bag. My two sisters are MIA. Before we got mom's diagnosis, she made me POA and medical decision-maker and I'm the executor of her estate. her estate amounts to her SS payments and we bought my house in Ohio together 18 years ago. Sisters are salty and have refused to help.

Mom is very difficult now. She'll take her ostomy bag off. Poop everywhere. I have to throw out my couch. She hides her soiled clothes so I have to go in daily now and look for clothes with poop on them. She'll leave soiled clothes in the kitchen. Soiled paper towels on the floor.

She's severely dehydrated today and refused to go to ER. When I threatened to call an ambulance, she said she'll go. why is she dehydrated? Because she fights with me about drinking Liquid IV and water. I had to finally hide the Keurig and the coffee b/c all she would drink is coffee. She's getting chemo and will dehydrate really quickly.

I can't afford and neither can she to be in a nursing home. I tried one that was highly rated after she had her surgery for rehab care and she lost weight and I would find with her with no pants on and soiled underclothes. I took her out of there. I'm scared to put her somewhere else, but I cannot afford much with my mortgage and general living expenses. I'm fortunate that for now, I work remotely, but I have a new job starting in july in pennsylvania and she has said she won't go with me. By July, her cognition and memory may be a whole other story, but I'm tired of fighting with her about basic care for herself.

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Its unfortunate that she had surgery with no hope for a cure. She should have just been on hospice and comfort measures.

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Look on Google (or have someone look for you if your not on computer) for your Area on Aging phone number. I believe each state has one. They can guide you towards in home hospice care. Medicare will pay for that. Hospice doesn’t always mean “end of life”. They can send nurses and aides to your home to help with her meds and showering. There are state grants you can apply for that will partially pay for other home help, like laundry and housework.

However if she’s too far gone, she made need to be in a nursing home full time. They will take her monthly SS check and you’ll have to apply for her to Medicaid in your state to pay the rest. Hospice can help decide if she can get in home care from them or if she needs to be in a full time facility. Hospice will come to your home to evaluate the situation.

Start the ball rolling by contacting your local Area on Aging Agency. Tell them you need help caring for her. Tell them you’d like hospice to come and evaluate.

let us know what happens

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Sending love and light your way . I’m currently going through the same situation and trying to choose the next steps to find proper care from my 77 year old mother with dementia without feeling guilty or like I’m giving up on her . It’s not an easy choice but my cup is empty !

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See if you can get a free legal consultation through your senior center. It’s my understanding that if mom needs to be in a NH that costs say $15,000/month and she makes $2900/month the income goes to the NH and Medicare pays for the rest. This may require a Miller trust as Geaton said.

If mom is peeing the bed, won’t wear depends, won’t use bed pads and won’t shower, she is past the point of home care, as much as you want to keep her there. I would say the same to the poster who’s LO is taking off the ostomy bag and pooping all over the house. It’s too much for non professionals to handle. So sorry for what you are going through.

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Lily, I believe you meant to say Medicaid, not Medicare. Medicare does not pay for nursing homes.

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Mmedicare home caregiver requirements for financial assistance

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Likely she needs to be in a nursing home.
You cannot manage her care any longer at home.
I do not understand what you are saying / writing about your son / living in your home / house.

Yes, she will continue to do as she does. This is a given due to the disease.
And, her level of need(s) will increase.
You need to place her somewhere.
You cannot handle her level of need.

Of course your tolerance is wearing thin. You do not have any tolerance left.
You must get her out of the home / your house (?) asap. If she is sent to a hospital for a need, she shouldn't be able to return to your home.

Call all government agencies you can - Medi-Caid, Medi-Care, Medi-Cal ... local Board and care. If you do not make arrangements 'soon' - you will not be able to manage / care for her yourself. This is an unworkable situation for all concerned.

I do question, however, what your son is doing. Perhaps he needs to leave the (your?) house. He doesn't appear to be helping at all in this situation. Why is he allowed to live in your home? He's 24. Find a local board & care and have your son pay for some of it. Do not allow him to (continue to) be a free loader. Clearly, he doesn't 'care' what this 'work' and responsibility is doing to you. He needs to 'step up' or 'step out.'

Gena / Touch Matters

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Has anyone mentioned a program called "Share of Cost" (SOC) with you, regarding Medi-Cal coverage? From what I understand, the program requires your mother to put all of her income and monetary assets toward the cost of the facility, which essentially "spends down" her income. Then Medi-Cal takes over the rest.

When a facility is required (and in this case, it sounds as if it most certainly is), I think there are "spend-down" options across the country, where the state/Medicaid essentially requires a person to put all of their income and assets toward care, which then qualifies them for aid to cover the remaining costs.

Please look up Medi-Cal's SOC program. Or cut and paste this web address into your browser to access a document describing the program:

https://www.sfdph.org/dph/files/CBHSdocs/BHISdocs/UserDoc/MediCalSOCFactSheet.pdf

This is such a difficult situation, and the systems in place don't make it any easier. Please take care of yourself. I wish you all the best.

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I'm in the same situation as far as my husband's income is too high to qualify for Medicaid. Ways to spend down income are to purchase a monthly burial plan for her funeral, get the most expensive dental and eye insurance you can get. Once that is spent down maybe you can get her income low enough to qualify. This was told to me by an elder law attorney. Also, if your mother has 2 assisted daily living issues (ADL), she can get qualified for Medicaid under shared cost for IHSS. ADL, incontinence, can't dress herself, immobile, can't put food in her mouth and can't bathe herself (not just not wanting to). You need 2 of those to qualify for Medicaid and then if her income is too high, you can do share of cost. She would have to give up all of her income and the remaining cost would be paid by Medicaid. A social worker would deem how much care she needs I believe. If she needs medical attention, after approved for Medicaid, she can get more care maybe even in a nursing home potentially. I hope my knowledge will help you, good luck and I feel your pain.

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Alashia1169: It is imperative that this arrangement change as you're quite ill yourself. Speak to a social worker at the COA (Council on Aging) in Antioch, CA. Your question "What can I do before she kills me?" holds more weight than you may think.

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You said it yourself: Caring for her is killing you. You are doing the work that two shifts of nursing do. It’s hard to understand but placing her in a facility will let you take care of yourself, and be a way to care for her, no matter what she says. If you become incapacitated you won’t be able to take of her. Contact your Area Agency on Aging. They should be able to help you. They understand the stresses that caregivers go through. If she gets hospitalized, tell the social worker that you absolutely can not, will not, take her back in. There comes a time when you will not be able take care of her. Do something now!!

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I feel like a hypocrite because I can relate to so much of what you are saying but refuse to let my mother go at this time. Right down to the stage 4 kidney and siblings. I don't feel like I have a life yet I know I am more fortunate than many.
1) I bought depends and put a pad in the depends so if she urinates it won't come through. It took a while to search for a pad comfortable for her. I have even put pads in her panties so when she puts them on there is reinforcement. Definitely depends with a big pad at night.
2) she also has a pee pot in her room which is just a dollar tree bowl with a lid she can use if she can't make it to the bathroom.
3) She has been doing sponge baths for years. I put water in a basin with soap and bring it to her.
4) I use a large chuck on her bed. Tape it to the sheet. So I can just toss it if it gets wet.
5) Just purchased mattress cover. I plan on putting on two sheets with a mattress cover on the mattress and a mattress cover between the two sheets. Still using a chuck taped on at night. I can wipe off the waterproof mattress cover and not have to worry about changing sheets so often.
6)I use a good spray called odoban when emptying her pee pot and I can spray the room and mattress.
7) soiled clothes not immediately washed go in laundry bags .
8)I live in Oregon and my friends mom owns a house but lives with her daughter, she has dementia. My friend has her on hospice care and there is no financial restrictions. She does not need to be near death. They come in and take care of her but if she needs to go to the doc or hospital she has to deny hospice care then get back on it after her appointment.
Another good friend has dementia. Her daughter is using a trust to deal with her assets.
This is hard. My sister's don't help either. Last night I was really depressed but the hypocrite will leave you with this...as they say on the airplane put your mask on first before helping others ...cause if you don't, you may not be in a position to help others.
Hope something I mentioned relieves you.

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Contact the Alzheimer’s society and they can help you with your situation. There number is. (800) 272-3900
she might be ready for hospice.

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Alashia, my heart breaks for you. You are truly burnt out. You need help STAT. You should go to your state’s website and see what help you can get. Also, call your county social service office to check to see what help you can get from them. PACE is another good program you can check out with your state to see if they offer it. PACE will oversee your mother’s entire wellbeing, but the only drawback about this program is that your mother has to live in the area where the service is provided and her earning has to fall within their guidelines. With PACE, your mother will still live at home but they will take her to all of her appointments and to daycare and they will bring her back home after her appointments. PACE is actually Medicaid. Another solution to this problem with your mother is to see if you can get her placed into a Medicaid SNF if she qualifies.

Praying that you will find help soon.

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PACE is not a program in most states, and almost certainly not in California.

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I have a mother like this. She will lower her underwear past her thighs in the middle of the night or tear up or kick them off.

Trust me, you don't have to do laundry every day. Here's what I do:

I have a closed mattress cover, fitted mattress pad and fitted sheet on the bed, with underpads sandwiched in between each of them. So:

1. Layer One: disposable underpads on top of mattress (to keep stuff from seeping through and stinking it up)
2. Layer Two: mattress cover with zipper.
3. Layer Three: washable underpads.
4. Layer Four: quilted fitted mattress pad
5. Layer Five: disposable underpads
6. Layer Six: fitted sheet
7. Layer Seven: last layer of disposable pads

With this system, the worst that happens when my mother has accidents is that the topmost sheet and disposable pads in the topmost layers get dirty. So, what I do is I throw out and replace the disposable pads on topmost layer (Layer Seven, which mom was sleeping on). If the fitted sheet gets dirty, I throw that in a bag for laundry and replace it with a duplicate. If the underpads underneath the fitted sheet get dirty, then I replace with a fresh layer of disposable pads before replacing the sheet.

For the "laundry every day problem," have a lot of duplicates of everything so that when one set gets dirty, you have another set to throw on in the meantime. If you feel like you have to wash right away because you're afraid of staining or odors becoming permanent, you can presoak the soiled linens rather than launder right then and there (which is what I used to do). That will buy you some time.

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In Canada we have something called LHIN. They can advise you and assist you with getting in home help. I sympathize with you. We help our mom out financially to pay for her stay in a retirement home. Talk to a doctor about what agencies are available in your area to provide help. Depending on her health she might qualify for a disability tax credit. Look it up online and it lists the conditions need to qualify. It requires something in writing by her doctor to confirm the disability. My mother also tends to resist help. I ask her if she'd be willing to let staff help her with her shower rather than telling her to take a shower. No one likes being told what to do and when to do it. If she still won't cooperate tell her you can no longer care for her and that her options are to work with you or go to a home. You must be calm when stating this or her back will go up. Don't show anger. Tell her you want to find a solution that works for both of you. Does she have dementia? If so meds might help to calm her down. There are also meds that can help with aggressive behaviour. I also have been feeling burned out. I'm coping by praying the serenity prayer and taking one day at a time. I also make time for things I enjoy. I know I'm doing the best I can for my mother. Re the bladder issues do you have a commode chair within easy reach of your mother? Look online for incontinence underwear and ask your mom to pick out which ones she would wear. A leather/vinyl chair would be easier to clean and might not absorb the smell of urine as much as a cloth chair. I hope this advice helps. Hang in there. Access whatever help you can get and try to take care of yourself.

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I am so sorry you have to deal with this. Prayers up. Is there an agency in your state that can help you get care for her outside of your home preferably? (Caretaking in all forms is a woman’s issue. Politicians need to help us more. ) Sorry…
I’ve read to play music to try to help soothe. I play gently in my mom’s hair. I try to laugh with her to get her more compliant. Ask instead of state. (It doesn’t work but I try.) Me: Are you ready for your bath now? Her: We can take the pictures to Mama’s house (my granny been dead since 76)
Have you tried a home health aide a few days or weekly? Care.com or the Aging agency in your town/city. Visiting Angels, Bayada, Honor/Home Instead. Please try a nursing home or at least a home health aide. (Turn your phone off when it’s their shift. Really give yourself a break however you can.) Put all of your financials/important documents in a locked filing cabinet first.) Maybe a church/religious organization can give some direction/leads on a caretaker. Also be sure to tell the doctor about all her issues incontinence etc. The doctor might be a resource to help find care. We have OakStreet health and other doctors offices that seem to specialize in senior care. Again, so sorry you have to deal with this. Please find a way to do something that brings you joy. Remember it’s your mom’s body but not her.

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I am so sorry you have to deal with this. Prayers up. Is there an agency in your state that can help you get care for her outside of your home preferably? (Caretaking in all forms is a woman’s issue. Politicians need to help us more. ) Sorry…
I’ve read to play music to try to help soothe. I play gently in my mom’s hair. I try to laugh with her to get her more compliant. Ask, instead of state. (It doesn’t work but I try.) Me: Are you ready for your bath now? Her: We can take the pictures to Mama’s house (my granny been dead since 76)
Have you tried a home health aide a few days or weekly? Care.com or the Aging agency in your town/city. Visiting Angels, Bayada, Honor/Home Instead. Please try a nursing home or at least a home health aide. (Turn your phone off when it’s their shift. Really give yourself a break however you can.) Put all of your financials/important documents in a locked filing cabinet first.) Maybe a church/religious organization can give some direction/leads on a caretaker. Also be sure to tell the doctor about all her issues incontinence etc. The doctor might be a resource to help find care. We have OakStreet health and other doctors offices that seem to specialize in senior care. Again, so sorry you have to deal with this. Please find a way to do something that brings you joy and peace.

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I feel like the Kaiser Social Services person is steering you wrong.
Contact the County Department of Health services. I believe (maybe I'm wrong)
that no one can be refused medical services due to inability to pay.
Find out what services she might be eligible for, and continue looking for a care facility for her. All of her Social Security will be used to pay for it, and typically, Medicaid should cover the rest, if she doesn't have the money.
I wonder if you're only looking at Assisted Living options. That is very different from Skilled Nursing Facility or Memory Care.

You do not have to be responsible for taking care of her. Does she live with you? If she is living on her own, Social services should do a welfare check on her and if they see she can not take care of herself, I think a solution will be found pretty quickly.
If she is living with you, find any reason for her to go to the hospital. And when she's ready to be released, refuse to take her home with you. Tell them that you are not able to care for her. They will have to figure something out, but she is not your responsibility!

You are burning out! And if you don't take care of yourself first, this really could kill you, and you won't be any help to anyone.

With her $3,000 monthly income, can't you hire someone to come in to the home to help out?
I hope you find the right solution soon!

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I am replying to a later statement that the U of California did not take out Social Security so your mother does not have Medicare. I am not in California, but my guess is that state of California employees do not participate in Social Security but instead have their own retirement system. My father was a local government employee elsewhere (not in California), and that was the case. Years ago I also looked at a position for myself working for the state of Illinois, and that was also the case there then. If you haven't done so already, please check to be sure your mother is not eligible for retirement funding through the state of California.

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My 78 yr old mom has Alzheimer's. She is very difficult to deal with. Refuses to wear her depends and wets the bed and takes the bath pads off now. What to do?

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