Dad has been refusing all outside help I have set up. Do I just continue what I am doing?

Question

Dad has been refusing all outside help I have set up. Do I just continue what I am doing?

Follow

Share

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.

Care Decisions Home Care Refusing Care

This question has been closed for answers. Ask a New Question.

28 Answers

Most
Helpful Newest
First Oldest
First

Mabe his doctor can offer him a light medicine that would make him be a little bit less objective... good luck.

Helpful Answer (0)

Report

He continues to function at this level. He is not a danger to himself or others with "what you are doing". His small meals are what he wants. Maybe you can get a agreement for help with bathing every three weeks. All you describe is his end of life wants. It is hard for you to just "meet him where he is" when you come to give yourself and what you do. This is a real service for your dad and you are doing your best. Do not get "pushy" and just enjoy the opportunity you have. When he is gone you will have "peace of mind" from doing what he wanted and what you have done. As he declines....he will be at a place of not carying about what he can do. He will give you permission to place him. If he is "resistant" you can get the Dr. to give a mild anxiety med. that will help him "not to care". When time comes Hospice will help him and you.

Helpful Answer (1)

Report

I went through the same thing with my 92 year old father trying to take care of himself and my mother with dementia. They had the long term care insurance to handle part of the expenses and he still fought me on getting outside help. I did what I could, being an only child and running my own businesses. Things changed when my mother fell and broke her hip. He was mad at me, but I set up assessments to get the ball rolling on CNAs and visiting nurses after the Medicare supplied therapies stopped. After she recovered from her hip he started firing the CNAs, then his health started declining and again I insisted, and against his wishes arranged for more assessments and more help. He complained, but the CNAs were pros and helped me reason with him. I'm glad I did what I did, even with his complaining and to tell you the truth, he could be very verbally aggressive towards me. As it turned out, his health was declining rapidly, and when I explained that I couldn't be there 24 hours a day, he reluctantly accepted the help, although could be very unpleasant at times towards me and the help, but they handled it like pros. He has since passed away and my mother is now in memory care, but I'm so glad I insisted, the battle it was, because the in-home care turned out to be invaluable for all of us.

Helpful Answer (3)

Report

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!!

Helpful Answer (7)

Report

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.

(2)

Report

I am all for being there with him when caregivers come to the house. You can facilitate the experience and also witness who works better with him. Sometimes, you can get tot the heart of the matter as to why he is refusing to use the shower or allow another person to help him bathe. My dad was against a stranger helping him bathe; finally I managed to get him to agree to having help, if he wore a men's wrap-around towel during the shower. Sometimes, one's parent doesn't recognize the need for help. With my mom, I helped her make a list of tasks that she was okay with a stranger doing in the home. After a few visits, she came to appreciate the extra help. Over time, we were able to add a few more things to the list. We were lucky as most of the people who came in to help were very kind and while maintaining professionalism were like friends. Dad was willing to eat the meals that were delivered; mom was not. It's easy to say what has to be done, but your parent has their own ideas. I am a bit of a perfectionist, and learned to relax a little about things. Getting into a tug of war usually doesn't work. Try instead to aim for little victories by breaking down your goals into smaller bits and really listen to what your dad is saying. If he feels heard, he might be more amenable to trying something new. It's a delicate balance between honoring his need for independence and keeping him safe. Getting into an argument about concepts won't work as well as recognizing a reward or benefit in the real time. No matter how small the victory, underscore that positive thing.

Helpful Answer (2)

Report

Wild, what can you live with?

"Have you tried your best?" That's a jarring question a councellor asked me. She explained she didn't mean do more, be there around the clock etc, but what could I live with?

If I found my relative fallen on the floor (again) or worse, what regrets would I have?

I decided to alert my relatives Doctor straight away, & APS (our version) if/when worse.

I accepted the fact my relative wanted to stay home *as long as they could* as their priority.

I helped add safety measures but accepted the fact I could not eliminate all risk. Also, that if it crossed the line into dangerous, to call time.

The dangerous line I chose (you may do your own) is any of these major red flags - making living alone just too risky. I call them the 4Fs;

Fear: paranoid delusions.
Fire: kitchen accidents, burns.
Falls: constant falls
Fraud: falling for scams

Any of these will trigger a call to EMS by me & request for a Social Worker to be assigned.

Helpful Answer (3)

Report

Imho, yes, you should continue with your plan of action. This is quite typical of most elders and what is likely to occur if you do nothing is a medical emergency/crisis/crises. Prayers sent.

Helpful Answer (1)

Report

Unplug the stove if electric or turn off the gas to the stove . Oops , does not seem to be working ...

Helpful Answer (1)

Report

Jasmine9, I used a local agency who came recommended to me. They have their own caregivers and they has have care managers available, also. I used both and the care manager organized all the care for me and made arrangements for doctor appointment transportation, etc. Now that we no longer need the caregivers, we kept the care manager. In addition to her knowledge of resources available, she has also been a big asset in working with the medical community as this is all new to me.

Helpful Answer (1)

Report

This is unfortunately very common. I feel your pain. My mother has dementia, but as I often said it was my in-denial father who made their aging process difficult. The desire for independence is in all of us. Don't feel you have to protect him from something bad happening, if it is his decisions that drive it. Trying to protect him will just burn you out and feed into his denial. What I suggest is gathering as much information as you can about services available to be able to respond quickly in an emergency. Perhaps work with your area agency on aging to develop a contingency plan.

Helpful Answer (4)

Report

Yes!

Help your dad live his best life by supporting his personal choices.

It is so wondeful that he can tell you what he wants and who he wants around for support.

Follow his wishes, 100%.

Helpful Answer (1)

Report

Why not call the caregivers to set up appointments at times that you can be in the home while they are. Let them do the work. You might have to do this several times until he gets it that THEY are doing the work and you are there to visit and make sure the tasks get done. He might find that he likes one of them and allows the help.
If you're only there twice a week, a lot can happen when you are not there. It - sounds as though his denials of help actually result in you doing it for him anyway, so it might seem to be working for him. Talk about falling and breaking a hip that may never mend correctly - maybe/maybe not he'll listen.
Would he wear an emergency alert necklace? When he eventually falls, at least he could push a button for help.
Can you talk to the providers and tell them that he cannot cancel the visits - you would do that if it needed to be done? Maybe not because they might view that as him not being able to make his own decisions and then question why he is still in the home alone in regard to safety.
You could show him some assisted living facilities and ask which one he prefers when he finally hurts himself...I doubt he would opt for one if he still thinks he can manage without help, but you never know.
If money allows, you might think about hiring daily help and he has no say so about them coming. He might not talk to them, but they will do their chores anyway. As sad as it is to wait - that's what you might be doing. Waiting for the accident that requires he leaves his home. Or at least until a doctor deems him no longer able to make safe decisions as the dementia progresses.

Helpful Answer (4)

Report

You can try to talk to him until the cows come home and he will only get worse and more stubborn. First get a Power of Attorney so YOU make the decisions. Once you have that, tell him he has a choice - either accept help starting now for everything OR he will be placed. Find suitable places first so you are prepared to do what you have to do. You cannot allow this man to continue with this behavior threatening his safety and making your life h*ll. Either outside support or he goes to a facility. Be very, very, very strong and make sure he listens. Then do it.

Helpful Answer (2)

Report

I hope my kids let me make some of my own choices.

Often, much elder treatment is unnecessary - but churns money for providers. My parents kept saying they were tired of going to doctors - and it was unnecessary - their entire golden years could have been spent in waiting rooms if scheduled according to self recommendations.

(0)

Report

See 1 more reply

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.

Helpful Answer (7)

Report

* "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

Helpful Answer (7)

Report

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).

Helpful Answer (8)

Report

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 me.......ie 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 evaluation.........my 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.

(2)

Report

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.

Helpful Answer (6)

Report

Cameras are not enough, and chances are he cannot use first alert. You can't have any dementia for that to work.

(2)

Report

It could be that dad sees you as a child trying to run his life. Inlist the help of his Primary Care Physician. Tell the doctor that dad is refusing help.
The doctor should step in with some sound advise.

Helpful Answer (3)

Report

You need to either live with him, he with you, because he needs 24 hour supervision-- or put him in a nursing home because he is CLEARLY not safe being by himself. This is a disaster just waiting to happen, and it can happen fast. All it takes is ONE FALL to be the game changer. He could leave the stove on...or overmedicate on his pills because he forgot that he took them...anything is possible..or start wandering.

The sad thing is that you know how dangerous it is for him to live by himself and you are trusting his "judgement" which he probably cannot do for himself. That can kill him. If he refuses all, you need to act on his behalf and get him hospitalized (call the cops if necessary and ask them what to do--in Florida they can legally Baker Act them which means involuntary hospitalization for psychiatric evaluation) and get a legal guardian established if a power of attorney, if not already done.

DO SOMETHING NOW!
CONSIDER THIS AN EMERGENCY
DO NOT LET HIM LIVE BY HIMSELF.

I took care of my mom for 15 years due to Alzheimer's and I know what I"m talking about. She required 24-hour a day constant supervision. Yes, 15 years. She died of other natural causes not related to Alzheimer's, age 90 (she was insulin-dependent diabetic, untreated high cholesterol because I had no idea if she had side effects from statins, hypertension, kidney and liver diseases). That surprised me because I battled her Alzheimer's for years and years and kept her going. She was only bed ridden for 2-1/2 months. I kept her going as long as I humanly could. I did it because I love her and I always will for the rest of my life. When she died, it took quite a long time for me to adjust to this. I'm still recovering from her death. It's been nearly a year ago, but I adjusted to this life change. And I never regretted caring for her -- she lived good quality years.

Helpful Answer (3)

Report

I understand your very difficult situation. My mom was in a SNF and assisted living, with what I thought was poor care.

She's now home.......I took her out of assisted living..........and took her to the hospital because of abnormal labs assisted living never followed up on.

Hospice helps, but she needs a lot more care...........I'm looking and talking about extra hired help..................how do people find help that they feel is reliable?............perhaps asking the hospice nurse might help if she knows of any agencies. So far, the agencies I've contacted have been from what I see on the internet, or picking up forms in a local office.

I try feeding my mom a bit, ensure is what she mainly likes................helping with the incontinence.........very difficult, and feel like I'm going to have to hire additional home health to take care of her. Any suggestions of where to look for reliable home health would be appreciated thanks.

Also, she has long term care insurance, but the horrible SNF won't fill out the required paperwork that the insurance company needs. This has been going on since July. WHAT A HORROR. I've spoken with a lawyer about trying to get the required paperwork, and am thinking of hiring him for that service..........so legal fees too obviously..................I am so disgusted that the SNF will not provide the required forms to the long term care insurer. Any advice appreciated.

(1)

Report

See 2 more replies

I had very similar issues with my dad. The last straw was him plugging in two, wet electrical cords and almost electrocuting himself. His hands were mildly burned. However, I had to set up an intervention appointment with his doctor. His doctor was a great help. He frankly, told him it was too dangerous for him to live at home. My dad was still driving and could have killed or seriously injured someone. It was a lot to deal with, but it all comes down to the safety of all.

Helpful Answer (5)

Report

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.

Helpful Answer (15)

Report

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).

(5)

Report

I agree with jkm999; just bring the groceries, nothing involving the stove, and wait for him to realize his way isn't working. If he asks why you've stopped cleaning, etc., tell him it's because he stinks and says he can handle everything on his own.

Helpful Answer (3)

Report

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???

Helpful Answer (5)

Report

In her Sept 22nd follow-up post she states that he has left the stove element on twice that she knows of.

Helpful Answer (5)

Report

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?

Helpful Answer (10)

Report

Thanks for your questions. We have been having problems with hygiene, dirty clothes and odor. He was insisting on crawling up the stairs to use the tub. There is a shower on the main level he refuses to use. He fell when he went outside in January and hurt his back
I will continue my level of support. He says I owe him. He is self-centered, doesn’t care about anyone else. His filter is off and says what ever comes into his mind. He thinks he can manage independently. He cannot. The car keys have been taken away but he still thinks he can drive. The doctor took away his license.He has left the stove element on twice that I know of. He has one friend that drops in once in a while and family that drop in for short periods. He repeats questions, forgets names, has gone through a period where he saw bugs everywhere. It goes on and on.

Helpful Answer (2)

Report

If his car is still there, I would move it elsewhere incase he has another set of keys.

(2)

Report

See 2 more replies

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.

Helpful Answer (21)

Report

Thank you so much. This has helped me greatly!

(6)

Report

See 1 more reply

Of course I understand that you are anxious about your father, but you don't mention any incidents or accidents or actual problems that have happened - is he not bathing/showering, for example, or is just that the thought of his bathing/showering alone making your hair stand on end?

Are you unable or unwilling to continue your level of support? If so, have you tried explaining that it is causing a problem for you, and asked him how he might manage independently?

What does the mild dementia amount to? - goodness, I'm sorry for so many questions all at once! But it makes a difference.

Does he have any friends of his own age, or meet any of his peers?

Helpful Answer (3)

Report

Leaving the stove on?? Not good.

(2)

Report

See 1 more reply

This question has been closed for answers. Ask a New Question.

Dad has been refusing all outside help I have set up. Do I just continue what I am doing?

28 Answers

Recent Questions

Popular Questions

Related Questions