Dad is 89 and has mild dementia, very unsteady on his feet and refuses to use his walker. I have been doing shopping, cleaning , doctors appointments etc. I see him twice a week. He is able to make small meals for himself. He refuses to have meals delivered. I set up times for PSW to come in and help with bathing. He canceled him. He now wants the physiotherapist who is coming this week to be cancelled. I have explained that this support is needed if he wants to stay in his home but he continues to refuse. He is on his own most of the time. Do I just continue what I am doing to help him without any outside support? Nothing seems to get through to him.

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I've been in your shoes. My father would let me hire people to help and then be so hateful to them they would quit. Or he'd outright tell them not to come back and I wouldn't know why they weren't showing up. I got him Meals on Wheels deliveries which he threw out uneaten opting instead for cheese sandwiches. Since he wasn't incompetent, just had mild memory loss and advanced age, I finally just let it go and waited for the inevitable disaster. Luckily for me it was a small disaster but enough to get him to realize that living alone wasn't sustainable any longer. Since he refused to have people in his house (except the cleaning lady of longstanding who actually didn't clean much of anything) he finally agreed that an assisted living apartment where he didn't have to have people actually in his living space was preferable. My advice is to you is to keep your two visits a week but do not increase the frequency or you'll get sucked into the caretaking role full-time. Keep doing the groceries, etc but no more. And let everything else go. Don't arrange help, don't do any extra things yourself. If he wants to live alone "independently" then let him. Hope that you are lucky like me that the inevitable disaster is a small one but until that happens there is nothing more you can do and you'll only make yourself crazy trying to fix an unsolvable problem.
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Wild31 Sep 2020
Thank you so much. This has helped me greatly!
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Let the chips fall where they may. Unfortunately it’s going to take a disaster for him to come to his senses. Hopefully it won’t be life threatening. Keep doing what your doing, but no more as others have posted you’ll get sucked into full time caregiving. Went through this with my Mom, unfortunately it was that final fall that killed her.
It’s his life and you can only do so much, so don’t be so hard on yourself. Much like having children, there’s a time you need to let go.
My thoughts and prayers are with you.
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Cece55 Sep 2020
I agree. Control as much of the environment (home) as you can but you have to allow as much independence and self-determination as they desire (within reason).
Sounds as if he's ready for memory care; the driving and stove are scary, and the bugs and stuff pretty far along.... If you can't get him to a doctor to get diagnosed (probably can't, I guess), what about calling Adult Protection to come check on him, when you're not around?
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This sounds like exactly where I was a few years ago. Hang in there! We had the financial ability to hire a care manager who was finally able to convince him to accept help. He would not listen to me. Then APS got involved and told me to get guardianship, which I did, but having all the legal authority of guardianship does not mean you can force him to move. I don't care what anyone says here: It's not like a 2 year year old that you can just pick up and move from his home or force to accept care. He had already had a HUGE meltdown when I tried to take his car keys away because he continued to drive after his license was revoked (was not successful as there were more sets of keys I didn't know about). This resulted in police, handcuffs, and a week's stay in the hospital and further eroded his trust of me Up until a year ago, he would not even allow me to have a key to his house nor was I ever allowed to be alone in the garage where he kept his cars. The hospital said he was OK to go home. We could not convince them that he needed to be in assisted living. We were finally able to get him to accept outside help 3 days a week for a few hours and then I would go to visit one day a week on Saturday. I bought easy meals to microwave and nothing that needing cooking other than microwave. Over a year's time, care finally increased to 7 days a week, 6 hours a day. After a few years of this, he was finally hospitalized for dehydration and he was not allowed to return home. He went straight from the hospital to assisted living and now, a year later at age 94, he is in skilled nursing, which selfishly, has made my job easier. He is safer and gets the care he needs now. I have been forced to stay away because of covid.

This has been a roller coaster and a nightmare but things are leveling out. He still owns the house but I have been able to finally do my full duties of guardianship and conservatorship. I have discussed with the attorney selling the house but he is very fragile emotionally because of his dementia and that would make him spiral further so we have decided to leave well enough alone for now, as the attorney has said he will receive notice if I try to list his house.

I started being involved in his care 5-1/2 years ago - at about the point you are. It will be tougher before it gets easier and some days you will hardly think you can get through it. But no, he will probably not listen to you. It took someone from the outside to get my dad to listen and realize he needed to accept care. And yes, he still asks about when he's moving back home (which he's not) and I have explained to him that his level of care is such now that he needs to be watched 24 hours a day (he has many health issues now and is fully confined to a wheelchair).
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Jasmine9 Sep 2020
My 94 year old mom recently came home on hospice, when I was handed some very abnormal labs ordered by a physician, when she was in assisted living.........seems the "doctor" who ordered the labs, never followed up on them, and I had to take her to the hospital, and she came home on hospice.

So far I am very disgusted with the SNF and the assisted living places she's been, and I felt that taking her home.........out of the assisted living place which she didn't like, as I felt she was declining so much, and really needed hospice.

I want to hire additional caregivers, and have consulted several agencies..........I'm concerned who to trust...........maybe the hospice nurse can help me to find reliable extra help.

My mom is 94 years old, has vascular dementia, is incontinent and is bedridden....................the whole thing has been a nightmare..........she had been walking poorly with a cane before April, and refused any other suggestions by walker, wheelchair, and said I wasn't being "encouraging". She had many falls, and finally after the last fall in April, developed a UTI.......then just lied in bed, until I demanded she be evaluated in an ER. The hospital diagnosed her with vascular dementia also. It was not what I wanted to transfer her to a SNF, for "rehab"...........but the palliative care nurse refused hospice at that time, as she apologized that my she wasn't able to do a proper mom did have a terminal diagnosis, which somehow she wasn't able to "see" or know about, and told me that normal again didn't qualify for hospice.

What a nightmare since the end of April. My mom was transferred to a SNF where PT worked with her, with what I thought ridiculous goals.......I couldn't get it because of the pandemic, and they wouldn't listen the family's wishes (mine)..........they worked with her transferring from the bed to a wheelchair.........I listened to a lot of "stuff".........first they said a 2 person transfer, eventually a 1 person transfer, and I knew any goals for her to walk again would be futile. She couldn't even stand up by herself.

After the SNF horror, I transferred her to an assisted living facility with an enhanced license. She didn't like it there, and I saw the labs when she came home.............abnormal and never followed up by the doctor. What a cruel joke.............why even draw this blood work if you're not going to follow up on it and/or tell the family about it. Some of this
"medical" work is ridiculous, and I think only done for profit by some facilities and "doctors" working for them.

I took her out of the place..........she was hospitalized and now is home on hospice.

I feel like I'm going to need extra hired help, and would appreciate it if people can tell me where they looked for reliable extra help..........thanks.
* "Nothing seems to get through" . . . is due to changing brain chemistry so there is no place for blame. I believe he is also speaking through his own frustration, confusion, and depression, in addition to dementia. "Nothing seems to get through to him" because nothing can - (or little can).
* I believe it is a balance of doing what you can and letting go of what you can't do for the benefit of your dad.
* One change I made [w/my 87 year-old friend (I manage all his care-he has no one else] is making my phone number the main and first contact # for all care.
* It is heartbreaking and realizing he is currently 'in charge' - at least on paper - of his own decisions is a reality that needs to be faced by letting go. If you can take more control through a POA for healthcare (and/or financial), do it.
* Be careful with over-extending yourself and chasing a rat on a maze. Learn to do what you can while accepting he is unable to make the best decisions on his own behalf.
* We all want and 'try' to hold someone together for as long as we can for their best quality of life. I believe it is important to realize 'life through their experience' and not ours - to support / help you adjust your own thinking and behavior. Perhaps the most you can do on some days is bring him a bouquet of flowers to enjoy. Gena
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Until he is deemed "mentally incompetent" by a doctor, he still has the rights to live his life his way. Expect that falls will happen. Expect that he will only eat meals he is likes and can manage. Expect that he will tell "strangers" to leave his home. You can only manage within the "window" he will allow. Maybe he is more willing to allow housecleaning - or any service - when you are there to reassure him that this "stranger" is safe. Try to help streamline his home to make it less hazardous for him (get rid of tripping hazards). Post signs on the refrigerator and inside doors with your name and contact information - so EMS has good contact information for when he does have a bad fall. Keep a notebook with his medical history, his insurance information, and his doctors with you. Acknowledge that his broken brain is making managing his care more challenging. Accept that is will get worse with time. Focus on the love and beauty of times with him.
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I set up care for my aging parents ... and as soon as I returned to my overseas job, my father cancelled the help because he didn’t want to pay! My sister started coming every other weekend and sometimes more. He and my mom were managing fairly well...with the exception he has given up driving. Then I started getting messages from my sister telling me how much they needed me to return and live with them. I SHOULD have insisted on a professional “needs assessment” from a qualified organization ...and then..insisted on a caregiver agreement including expectations and remuneration. All drafted by an elder care lawyer. Unfortunately, I responded out of guilt and obligation and moved into a house where I wasn’t wanted...and certainly NOT needed 24/7. After over a year with NO salary or any type of remuneration (other than paying for my gas in my car), I have managed to have them meet with an elder care lawyer. We will take his advice on a care assessment and then draft an agreement so at least I have some income. They found out that my living here could be a good thing since it could protect the house if they run out of money and need Medicaid/nursing home care. So the fact that it could benefit him/ his estate (and because of C19)...he at least sees a benefit to my living here. The ONLY reason I will be receiving compensation is because the lawyer said it was an acceptable use of money in “spending down assets” for the purpose of Medicaid application, IF needed in the future. I gave up a dream post-retirement job to return home to care for two people who don’t want me in their space...and expect me to do what they want me to do for free.

moral of the story—- get a needs assessment and then put together a plan with the help of a elder care lawyer. Make YOUR decision based on what you are able/willing to do. Don’t let anyone (including yourself) get guilt-tripped into this!!
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ACaringDaughter Sep 2020
Make decisions that work best for you and then take ownership.

It is not fair to blame people, guilt, etc. for the decisions you make.
For now, let him do as he pleases.

He knows what he wants and it seems he's managing.

My Dad didn't get help living in his own home til he was 95.

I would buy microwaveable lien cuisine dinners.

Easy breakfast foods like waffles, jimmy Dean's Breakfast biscuits with egg am, cheese and sausage, pancakes, apple sauce, yogurt, ect

Leave the Walker there, he'll use it when he feels he needs to.

My Dad would set his plate of food in the walker seat snd push it over to his table using the walker.

Every one is forgetful at some point but once he isn't able to do for himself, he'll let help come in.

You may also put a seat in the tub for bathing or install hand safety rails to hold on to when in the shower, that's what we did fir my dad so he would have a couple of strong handles to hold on to while getting in and out if the shower.

Set up cameras in the home so you can keep an eye on him. Have him wear 1st alert in case of a fall.
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cetude Sep 2020
Cameras are not enough, and chances are he cannot use first alert. You can't have any dementia for that to work.
In her Sept 22nd follow-up post she states that he has left the stove element on twice that she knows of.
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Thank you, Barb, I see.

Wild, have the medical appointments resulted in any useful information about what's going on with him? How long would you say he's been struggling?

Then there's this little bit: "He says I owe him." Mm. That's what he thinks. What do YOU think???
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