Two parents on the decline.

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Two parents on the decline.

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Hello. My parents are both showing signs of dementia. My dad's has been gradual, but Mom's was like falling off of a cliff. My brother and I started looking at continuing care communities and found a few we really liked. But my parents were horribly resistant to the thought of moving out of their home. We suggested having someone come in a few hours a day; same resistance. We were backed up by their closest relatives, but still they resisted.

The house started getting messy; plates of cat food around, papers all askew, garbage outside in bins but not taken down to the curb. We even called APS and met them there to let them in; they determined that their home was not an environmental hazard since it's not a hoarding situation, and their power and water were on.

Last weekend, Mom went to a neighbor and said her heart was racing and she wanted to go the hospital. The neighbor called an ambulance. Her heart tests were fine but they admitted her for further testing and diagnosed dementia. They sent her to a rehab, where she has been for 4 days. She is pretty weak and they are trying to build up her strength,
So Dad is alone in a big old house. We took him to visit her over the weekend, but today my cousin offered to take him and he said he is too depressed and too weak. She is not ready to come home and even when she does, they are going to need help.

I live about an hour and half's drive away, and my brother about 3+ hours away. I work this summer and cannot take off to look in on him other than weekends and maybe once a week in the evening.

We are at a loss here because he cannot be alone but refuses to see the big picture. We might be able to convince her, but her dementia is progressing rapidly. I simply don't know what to do.

Alzheimer's & Dementia Care Decisions Dementia Behaviors Parents Refusing Care

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Sounds similar to what happened with my parents. My mom has Alzheimers, my dad had vascular dementia, COPD and other ailments. We got them both out to tour facilities, but they adamantly refused. My dad had a health crisis, 911 called, hospital, then rehab. While in rehab, the Dr evaluated him and confirmed his vascular dementia but still told us he was free to make his own decisions, even though he is "clearly making bad decisions". So frustrating. Still, my sister and I did not relent. We flat out told my dad that he could not go home without 24/7 care/nursing for him and my mom. He did not like the cost of that. So, we gave him his 2nd option: Assisted Living. He still refused. We told him then that he could go home and he would likely have another health crisis and pass away in his house, but we were not going to allow mom to continue to stay at home. Regardless of what he said, we were putting mom in AL/memory care and he could make his choice for himself only. Then we enlisted the help of the social worker at the rehab. Somehow, she was able to convince him to choose AL. Although, with his dementia, he thought he had only agreed to VISIT an AL. Boy was he mad when we moved them and their stuff and left them at the AL. But, a few weeks in he admitted to his grandson that "it's easier for us here", he would NEVER admit it to me or my sister. Unfortunately, the years he spent TRYING to care for my mom (though if you asked him, nothing was wrong with her) took a toll on his health that his body could not recover from. From the stress of living with someone with Alzheimers and likely eating next to nothing and/or partially spoiled food, it took a toll on his health, he got pneumonia and succumbed after 3 months in the AL. My mom still lives there in the memory care unit. We are very happy with the care she receives and we are very lucky to have extended family nearby that still visit.
You may need to give your parents the option of the 2 choices. Enlist the help of the rehab social worker. Lie if you need to - we told my dad the dr would not let him go home without 24/7 care. If they still refuse, there is likely nothing else you can do and you will need to sit by and wait for another health crisis. My sister and I tried for 3 years to convince them to move, but we had no choice but to resign ourselves to waiting for that health crisis...

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For now until you can figure this out, hire some good caregivers. I'd hire individually, not from an agency so that you develop a relationship with your caregivers.

My parents had someone come at 8 am, she needed keys since my parents were still in bed when she arrived. She would make breakfast and then make sandwiches for them before she left at noon. The second person would come at 4 pm, make dinner, help with my father's leg edema device and get them ready for the evening.

That's the arrangement we had for my 90+y/o parents. We were good for a year and a half with this arrangement until my father's care needs became too great and he needed to go into a facility.

I hope your parents have their POAs and other papers already in order. But even if they do, I I would have a consultation with an elder law attorney to discuss protecting their assets. You are probably looking at a SNF and you need to know what needs to happen.

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Get him to a doctor to evaluate him for dementia and mental competency. OR, get him into the ER (given that he feels weak). Let the doctor admit him. Work with case manager or social services to get them both placed somewhere so they can be safe and as healthy as possible.

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One thing is for certain these changes are signs that your parents need help, it is way better to seek out solutions to the care levels that they will require sooner than you think now, waiting can only complicate matters and looking things from the perspective of a loving caring family it is difficult to see your own parents in this position. However, regardless of whether or not they may want to move out of their home or not, it is most likely inevitable. Many older people have made transitions that at first seem impossible to contemplate and yet can work out to be a much better situation for them. Leaving a person and more specifically two dementia people to care for themselves is a recipe for disaster. Intervention is required. There are many good professionals who you can turn to that have helped countless others in these similar circumstances. Sometimes when we are not sure or feel too alone in making a decision the tendency is to procrastinate. It is too late to procrastinate. Make some phone calls, garner some support and you'll feel so much better about where this is all going. Key is your mental health and happiness and a good quality of life for your parents for the season of life that they are now in.

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Hire experienced, seasoned home care help/aides who come 4 hours 3-4 times a week. Every other day, basically. They feed the cats and keep the open cans contained, manage the garbage situation and make sure garbage is properly bagged and at the curb when required. Manage the litter box on the day they are there. Also wipe and keep kitchen and bathroom clean and make grocery list and pet supply list. Every other day probably becomes daily in about 2 weeks for as long as this can meet the needs. Pay with parents money. Start looking for longer term solutions. This may buy you 3-6 months, depending on their health. Having both makes it more difficult. They will resist placement. If one parent is failing fast, consider hospice for that one. Messy, dirty, unsanitary and disorganized living conditions will drive you and your brother crazy. My grandparents were like this. Try finding a care aide who can contain the chaos as long as possible, if you want to delay placement. Be very explicit about conditions and expectations when hiring. Caregiver has to get along and form a bond with your parents but understand your expectation and experience. It’s a tall order.

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Thank you!

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Whatever is decided, your job comes First!

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bklynwen: Prayers forthcoming. Retain an attorney.

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I was in a very similar situation recently and used the hospitalization as the opportunity to move my mother into what we called a “rehab”, but was really a memory care facility. Since my mom could no longer be at home to “help” my father, we told him that we needed to hire someone to be at home with him. There was some resistance at first, but nothing at all like the resistance from both of them before my mom‘s hospitalization.They have both finally settled in. As my father‘s dementia increases, we know that he eventually will need to be moved to a facility, too, and we are hoping that he can move into the same one where my mother lives now. Prayers for you as you work through this really, really hard time.

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I understand what you are going through. Our Mom is 96-1/2 years old. Was born 1929, depression years. She and her siblings had to go live with their grandparents in a very tiny town out in the country. Mom's friends all her life were her brother and 2 sisters...all deceased now. Mom never had a social life. Has been a widow for 50 years, has lived on her own. When she talks about her childhood she cries, and we have promised her that since she was taken from her home as a child, we won't take her out of her home at the end of her life. So...we five siblings rotate staying with her. My oldest sister is 78 (79 in December), stays with Mom during the week, gets to go to her home on Friday afternoon and return to Mom's house on Sunday when relieved by one of our siblings. I go down (8 hours drive one way) to give my sister a week respite so she can schedule her eye surgeries, doctor appointments, mow her lawn, tend to her home, and just have more than a day and a half at her lovely home. She has 251,000 miles on her vehicle, and it's 1-1/2 hours one way to her home. She receives only social security and cannot get a job because of the situation. We recently took the initiative to get Mom approved for Medicaid Waiver, so now she gets in-home care 3 days a week from 9:30 to 5:30 and hope my sister can land an online job of some sort to bring in extra money because her savings is dwindling. The 3 days a week is still not enough, even with the 5 children Mom has. One of us gets sick...we have to scramble to figure out something. Yes, it's taking a toll on us all, in ways we never dreamed of. I'm a nurse of over 25 years, and I've seen end stage dementia and Alzheimer's. Our prayer is that the good Lord will have mercy and take our Mom a different way before she reaches end stage. Mom's happy place is her home, she is modest and would not want anyone else bathing her, changing her, turning her side to side, living with a feeding tube, etc., etc. Prayers for all of you!

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Please use your Mom's Medicaid to help pay for a memory care facility, before you or one of your siblings has medical complications from caring for your Mom.

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First of all, you have to acknowledge to yourself that they are beyond making healthy and appropriate decisions, and then you just make those decisions for them. You have to do it with a business head and not a daughter’s heart. Do what you need to do or they will leave a pan on the stove and burn the house down with them inside. Do not have a conversation with them, take them to see places or ask what they think. They are not capable of processing this information. It will be stressful for all but you will have to do it eventually so better sooner than later.

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The passion for my independence is life! Give me liberty. My choice! Not yours! Mine, Until I ask kindly for some help.

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Unless you are adjudged "Incompetent" legally under the law and for your own protection, I agree with you, William. If others don't like the messy house or the poor decision making they are free to walk away from it. But until you are told that you are legally incompetent, I believe your decisions about your life should be your own.

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Do an unsafe discharge at the hospital and get them to rehab. You may want to get the ball moving quickly. I had both of my parents out of their house. My dad was placed in skilled nursing and rehab. I had to move him to a personal care home. My mom was hospitalized and I refused discharge. I was appointed Guardian. My dad died and I had to move my mom to a personal care home. I sold their house to pay for my mom's care. This all happened in less than a year. People can decline very rapidly. You are both smart and not in denial about your parents. It is very difficult to go through this, but it's something most of us have to deal with. My mom was extremely resistant, but she finally realized that she was in bad shape.

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*Get a social worker & maybe try to place them in a facility & tell them it's to help them get some strength & a little physical therapy until you guys can get home.
Maybe that can be a way to ease them into a nursing home.
There's just no way they're going to be able to be on their own.
So either, you or your sibling will have to uproot & go home, and care for your parents or you'll have to place them OR, spend on daily in home care.
Sadly, there aren't many options for this.

I relocated to move back home after being away for 30 years to be with my mom & I am an only child.
I dealt with trying to do everything by phone when she had cancer at 78. My half sister helped a bit. I flew home for her surgery & 6 months later her radiation. And 2 years later I moved home.
Being away & trying to help from afar was the most stressful thing I've ever dealt with in my life. My insides were springing. It was stress.
Her 1st chemo session was awful and brutal, too toxic and potent for her...she moaned and was in pain and miserable the entire day morning afternoon evening and night... I was on the phone with her the entire day..like 12, 13 hours straight.....when she slept, awakened, I was calling the nurse. My half sister drove to her that night & called an ambulance. She was in the hospital for about a week off her 1st chemo treatment.
This is difficult when you live in another city, state!
I couldn't leave her by herself. So, I.m here for her...moved in with her (for now.)
You guys will have to make a decision. Can you relocate your job? Or, family? If not, you have to get professional assistance for them. You might need to get Guardianship as they might not allow you to get power of attorney for them. My mom didn't & I've read others' parents won't do it either. Take videos of everything when you're there..the condition of the house, Them in the mental state they're in etc. You will probably need that footage.
It just gets worse & so you have to do what's best for them as unfortunately, they're not in control of anything anymore!

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Thanks for your response. I am so very sorry for what you are going through.

I cannot relocate my job to another state; I am 4 1/2 years away from retirement and will need my pension and benefits in order to live. I also have some serious issues going on at home, but that's a story for another day.

Yes, it's incredibly stressful being far away. Guardianship may well be our next step.

I wish you peace.

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It’s time to get the sign off for a health proxy to make the decisions for them.

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so sorry to hear that you are going through this. I caregiver for both my husband and my father and it is not easy. I took a month FMLA from work just to set everything in place for home care. Taking leave was the best thing I could have done. Hopefully that’s an option for you so you can stay with dad long enough to get everything in order.

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They have a screwy POA set up where one assumes POA for the other if incapacitated; brother and I are the alternates. We have already contacted their estate attorney to issue an immediate POA.

For people who were so careful in planning, it's crazy. And they have always been very independent minded, so when things were better, they dug in their heels.

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Not uncommon, it’s often done. We should all have someone a generation younger as POA when we age and are more likely to need it

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Are you POA?
Do you wish to be guardian?
If so, Mom now has a diagnosis. Get her placed from her rehab into care. Dad should be diagnosed as well. You will speak to his doctor about this.
If no one allows you to intervene this couple will likely die in their home, the one or the other.

I would start with seeing an Elder Law Attorney for options here.
You have already been the APS route and in your area they sound incompetent to help you.
You have heard "You can bring the horse to water but you cannot make him drink; that may be the case here".
Not everything can be fixed. Seems that you have tried hard to no avail.
This WILL come to a head as it just did, with hospitalization, and you WILL get the call, either from hospital (contact social services at once) or from coroner.

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Don’t count on convincing people with dementia of anything, they’ve lost the ability to reason and make sound judgments. This is the time decisions need to be made in their best interests without tiptoeing around what they say they want. Hopefully they’ve appointed POA for healthcare and financial decisions to act for them. If they have not, it’s likely too late for mom to do the legal process but dad may still can. An attorney can guide you. Emphasize to everyone in rehab that mom isn’t safe at home. I wish you well in finding the best plan forward, they are blessed to have you

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The first thing you do is tell the Social Worker that she can not be discharged to home as it is unsafe.
Had your dad appointed you or other family member as POA? If so that person can begin the process of making sure that your parents are safe. If your dad has not appointed a POA you may have to seek Guardianship.
Schedule an appointment with an Elder Care Attorney.
And if you or other family members are doing ANYTHING to "prop them up" so they think they are independent stop.

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Two parents on the decline.

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