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.
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?
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.
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???
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.
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.
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.
The doctor should step in with some sound advise.
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.
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).
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.
* 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
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.
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.
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%.
"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.
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!!
It is not fair to blame people, guilt, etc. for the decisions you make.