Mom is 83 with dementia that has progressed to the stage of anger and resistance with in home help. Tried many different people and she doesn’t want anyone. She needs assistance with ADL plus gets up through the night but she sees herself as being fine.
No one will say that this is an easy thing to accomplish. You cannot reason with someone who has reached the stage she has. Her brain is broken and she is not capable of understanding that she is no longer 30 years old. There is no reverse gear on this disease. It will only get worse and she may start to wander at some point. Since she lives basically alone, nothing keeps her from going outside. If she is resistant and nasty to in-home help, they will start quitting on you. Enlist the help of her doctor. Start touring facilities. If you need to,since she is so resistant, tell her that her house needs “fixing up” and you’ve found s wonderful “hotel” for her to stay while that’s being done. My mom thought her room was an apartment in Chicago. Of course, the house will never be done. If no one has a POA for her, you may need to apply for guardianship so that you may handle her finances and the sale of her home. If there are many assets, you may want to enlist the help of an Elder Law Attorney.
ANd now I will see what others have to say, because I fear this. Just today my mom was totally obnoxious. She will not cooperate if asked, so I resort to telling her to do something...like "get away from the door" and she refuses. She was always a meddling witch. I, ahem, moved her away myself (to not interfere with some workmen in the garage) and she snarled and got physically pushy/shovy and grabbed my arm and dug her disgusting claws into my arm. Right now I don't spend much time with her even though we're under the same roof, but I do much cooking, cleaning, shopping, bill paying etc. She can't safely be left alone long. She can to some extent do ADL's IF she wants to. But you can't make her. She has not showered for 2+ years. Multiple sources have told me not to worry. We get her hair washed every 2 weeks and her claws filed once a month and her toe nails as necessary (by her thinking she's going out to lunch with dad). She had become resistant and uncooperative when I would come home early from work to take her...it works with her going with Dad...but he might not always be around at 102.
We tried in -home assistance that showed no initiative and failed miserable at any effort to get her to shower. I hope some of the folks here have an idea because as obnoxious as she is, the hair and nails are the least of what is going to need getting done.
I am very worried about you. Is there any way you can call someone, even APS, to get some help? Your mother sounds very far along in her disease. Please research help for yourself. Reach out to someone. You’ll be on my mind and I will be worrying about you until your write you’re doing better and have gotten some sort of help.
If you are not able to have her cared for in a humane, peaceful, comforting way at home, it might be time to consider researching local residential centers.
Some dementia patients really do have more respect for non-family caregivers.
Many daughters and mothers never have loving relationships, and we are of that type, yet have always been there for each other. We tried the respite care routine and it was a failure due to her unwillingness and the lack of initiative by those aides we had. In fact it was the wise people like yourselves here who concluded accurately that maybe the best thing might be hiring someone to clean, which I am in the process of investigating. Because if I am angry, it is in the demands made even more by my father for multiple tasks all while working part-time and shopping, cooking, laundering, bill paying, appointment making etc. The response you refer to as angry LOL...was nothing compared to what I felt a weekend ago when he came home with a note from a well meaning neighbor with referrals for an ENT and PT place...generating more work for me.
And just to be clear, I do not, nor could I easily, accompany mom on her bathroom visits...but she oddly does not smell, and the suspicion of professionals is that she must be washing around in some way. I'm just grateful they have also stated there is no obvious odor. And she blessedly is in good health.
To those who think memory care or assisted living is the answer, I always feel a bit perturbed for people to suggest that when they never know what anyone's particular circumstances or wishes are. No matter how great the burden, we are sticking together; mom is functional and ambulatory & in many ways, content in her environment, safe, and keeps busy with her daily reading. Dad adores her, they have been married 70 years, and neither of us wants her/ them placed anywhere. Their modest savings would be gone in a blink in today's world and it would destroy both of them as well as impact my own living arrangements. Dad thrives on his local activities which includes daily volunteering, talking to neighbors, mowing the lawn, walking, golfing...So however dysfunctional or functional this family unit is, it is what it is. I am not going to dwell and worry about what might happen. But my head is not buried in the sand either. I realize if dad is not in the picture, I may have to retire early to be around to watch over mom. We have no local family; my only sibling is in FL. Early Retirement will impact my own future income as a single. As for therapy...not that it's anyone's business, but I have been there, done that and have insight into my own thoughts. My budget is too tight to do it, I'm not interested, and I am blessed with some good friends and co-workers; and I just recently decided with the volunteer led support group from the Alz Assn...it was not serving its purpose for me. My time is better spent without the pressure of rushing to get there and just relaxing at home. It was no longer supportive as it had been with the original facilitator who left a year ago; many others dropped out. But not to worry, for how ever you interpreted my comments I have not lost my mind, don't go off in physical rages and still have a sense of humor. Thanks for caring:-)
i will always regret placing dad in assisted living. His dementia was advancing and I was fearful of leaving him at home while running mother to her appointments. But... here’s what you don’t know until it’s too late..... dad was better adjusted and more secure in his home than he ever was in assisted living. He blew out his knees roaming the hallways there day and night, falling and angry because he wanted to go home. Having him there turned out to be more stressful than having him home. But he went downhill so rapidly, taking him back home just became impossible.
So here’s what I wish I knew earlier that might be of help to you keeping you mom at home. First, her primary doctors office most likely has a social worker on staff. This medical liaison can arrange in home care trice a week for your mom through Medicare and it’s paid. It can be showers or cleaning or food. That’s A start.
Next, if your mom has any advanced health issues... place her on hospice care and a nurse will come out once a week for checkups and they’ll line up an Aid for bathing or other care once a week as well. Also, they have volunteers who can come sit with a loved one.
If your mom isn’t sick, look into a traveling doctor that you can get her on their service. That way she’ll not need to leave her home for medical, except dental.
If they were part of a church, contract the pastor or church office. Tell them you really need help... Any volunteers that could make a meal, come sit with your mom while you’re at work, housecleaning, etc. some congregations are amazing at helping in this way.
Your mom is better off at home, don’t let anyone guilt you. Knowing that she is a wander risk however, it is important to get some door alarms that will go off if she leaves the house. They make a watch that you can put on her wrist that will set the sensors off. Or, you can install the door sensor up high on the top of each door so you can hear the alarm if it goes off.
Make sure all the surrounding neighbors have your phone number. If your dad is with it, he needs to be helping you a little more as well. Be clear with him what you need his help with.
If she is going to be home alone without you or your dad, get an electric stove and then be sure to throw the breaker to the stove when you leave.
if she is getting to the bathroom okay and knows her environment, until she is a total wander risk let her be at home. Try to get some sleep and stop stressing. Assisted living is a nightmare too and at least she’s where she wants to be right now.
For one more level of security... that make tracking chips that you can put in her shoes or clothes. You can track the chip from your phone.
This last piece of advice is the most important... protect yourself financially. Draw a salary for your time. My sibling refused to give me any money after handling 100% of everything for the last year of my parents lives. I lost my business, lost my health and lost my financial footing. So you are important too!
i wish I had known how much I’d regret taking my dad to assisted living... it killed him. I also have wondered for a long time if he wasn’t being mis treated there... one year later and in still beating myself up. I can’t go back in time and fix my mistakes but I can encourage others with options.
hugs to too my fellow caretaker!!! You’re doing the right thing for now. You’ll know when you can’t do it anymore. Please keep us parted with updates!
THe primary care doc is not the devoted one I loved and I do not believe any care is covered by Medicare unless there has been a hospitalization. Mom is good physical health. Probably better than many. Her only med is half a BP pill. SHe has not accepted in-home care. I know all the game plans and ideas and the spa set up and the bribes. I am not the one for it to work with and the outsider routine was a failure as well. We have concluded it is not worth the grief on anyone's part to drag her kicking and screaming for a shower. I've learned to let it go. No odor, no skin breakdown...and no she would not be enticed by the game playing with dad either. She will listen to no one. My energies are better spent on other concerns.
Frankly our experience with the in-home help was a massive disappointment, an expense, not appreciated by mom (I still laugh recalling the day one of the nice aides left, I was walking her to the door from the kitchen where mom sat, slightly ahead of her, and she giggled as she reported mom had just said "Get lost" but we didn't know which of us mom was referring to LOL. It was more stress and hassle than it was worth, though getting someone in to pick up the slack as far as cleaning some would be a help to me and I am looking into that.
She doesn't need hospice or in home medical care. And again, the outsiders would generate more stress for me and the household than relieve it. To some I am sure this sounds like I am making excuses, and I don't care. Every family, every situation has both similarities and differences.
She is not a wanderer. Our community is safe, we know our neighbors and they know her. We also have taken long ago safety precautions. She has no interest in using the stove which always was electric, or the oven. All the knobs are removed and the microwave is on the child safe mode.
You are quite right about not stressing...and if there is any stress it is more from my demanding greatest generation father who is totally oblivious and clueless to how much his needs impact my life. Yesterday the garage door repair guys were here (which is when I had to "move" mom out of the way) and I was 1.5 hours late for work, time which had to be made up today, a day in which I had to meet him for the first appt at a new PT place for his balance issues. To quote the PT he is the strongest 102 year old she has ever met.
I work part-time so living under the same roof is a huge help to me as well. Dad is of the generation that family does for family. He is there for me as well, but mom was always the one looking out and doing the finances, although he has run his own business for many years. No caregiver agreement for him, and this is in a way my payback for their support...but when his will was updated it was sort of a use the assets for his and mom's well being, and whatever was left to be split between my sibling and me. SHe knows all that I am doing and from a legal standpoint, I will do what I have to in the end if need be.
For now I take it one day at a time and am grateful for the blessings in my life of my understanding work place and friends. Many have cared for their parents as well and I have learned from their regrets as well as my own mistakes. Having the help in already made me realize I don't want them in here, and I really don't need a paid agency having a staff person offended by my use of the word "Sh***y" as an adjective! Thanks for the support...take care yourself...
In terms of help from the social worker at my parents doctor's office, they were entitled to that assistance and no there hadn't been hospitalization at that time. My mother just refused to let anyone help in the home other than me for a long time. The person that came at the end that she tolerated to some degree was just doing cleaning.
Hang in there!
First, at least 1/3 of care givers predecease the person receiving care. If your LO has problems with someone else providing care for a few hours in a home they know, then how do you think they are going to react to total stranger when you are gone? Or a move to LTC without anyone being available to explain or comfort?
Second, what's the care plan when the care giver has a health emergency? You leave the home for a quick trip to the grocery store, unfortunately some guy in a big truck doesn't see you and slams into your car, pinning and breaking your leg. You are in the ambulance and then the ER heading to surgery and at least a couple of days in the hospital. How long is your LO alone at home? Do you arrange an emergency contact from the ER for some agency care givers to show up at the house?
I am my mother's primary care giver and she does do better with me than anyone else. After some initial push back, Mom now attends adult day care 3 days a week. My brother stays with Mom while I'm either in another part of the house or out of the house a few hours a month; other private pay in home care givers also stay with her a few hours a month. Mom stays with my aunt (her younger sister) a weekend or so each year. I insist she have other care givers so if needed the people replacing me are at least someone Mom knows and are familiar with her needs and routine.
Well, as many of us here had to do was wait for a medical emergency. When my Mom had a serious fall, it was 911, hospital, rehab, long-term-care. Mom never did go back home. She now needed a village to help her daily.
My Dad, he was the total opposite of my Mom, he was thrilled to have the caregivers come in to help him.
My dad however, refuses help when he hears the price. Plus doesnt want strangers. I'll keep trying though.
The option at this point is give her the option to accept help in or you will locate a Memory Care facility that she can move into . Or you wait for the first scenario.
If she is no longer making good choices then she can not be trusted to live alone.
Do you have POA?
It may come to a point where you may need to be appointed Guardian or have the Court appoint someone, either family or a Court appointed one.