My parents are both 90. My mom has early dementia and my dad is pretty good. They currently have AM care Mon-Thursday and refuse anything else. My mom is very strong and stubborn. Without the aide she doesn’t take medication or eat. She makes sure my dad doesn’t either. I am trying to have her accept an aide to cover the rest of the week. She says that I am degrading her. She is verbally abusive to me and did throw items at me recently.
My dad is passive and doesn’t deal with conflict.
I am an only child and I have to call them 4-5 times a day when there is no aide. It’s so hard! What do I do? I have arranged for an aide this weekend because they are too much.
Here is what I have learned that may help you.
-I am not Atlas. I can’t carry the weight of the world 24/7 and still maintain my own life. I can’t live his life and my life in equal measure, so I must choose mine. I chose not to move home and care for him.
-I pick my battles. There are things worth digging in about and things I have to just let go of and let him fail. For instance, I spend loads of time on his finances, making sure his bills are being paid, closing down his tax practice of 40 years, getting the commercial space listed for sale, and putting his cabins on the market for sale and making sure his other rental properties are maintained and that rent is being collected. All from 3000 miles away. He will need all this money when he ends up in memory care. This is a WHEN not IF, if his physical body outlives this brain disease. He is probably a year away from needing it, so I have to plan now. What I have to let go of is how clean his house is (he is still cleaning it but badly) and that his dogs pee and poop where they like. This will always be the case. I don’t live with him, so I can’t do anything about it and his girlfriend and friend clean it up when they are there. I let go that he refuses to take any medication, even an aspirin and won’t go the doctor. I let go that sometimes his clothes are dirty and he refuses to change them. I let go that he only eats junk food (this has always been the case) and have stopped fighting with him over it. Lots of letting go for my own sanity.
-I have fully accepted that you can’t reason with a broken brain. Because he won’t accept help I have learned not to ask him before I do anything. There is no point as it only causes him to start screaming and yelling and these episodes are epic, academy award worthy tantrums. He literally had a stroke during one of his rantings. Over it, don’t need that, so I LIE. Yes LIE. I have become a master of deception. Some people on here will be disgusted by this, but it is what works to be able to keep him and his assets safe, and him in the best emotional state that any of us can achieve. I have used my POA to get things done when I needed to, and flat out impersonated him on the phone with banks and insurance companies when needed to get things done that otherwise would take months (he has a first name that I can twist to sound female when need be) I am running the financial show behind his back without him even knowing. Me and his girlfriend tell him “the lawyer said you have to do this, there is no choice”, not “Dad, I think you should consider doing this.”
-I also try to give him as much independence as is currently possible. Yes, I could totally call APS on him a couple times a week for wellness checks and then work with a social worker to get him placed now, but I have decided that he is still “safe enough” in his house for the time being. I also know that putting him in memory care will be the most devastating thing for him that he could ever imagine. He will most likely be violent and abusive to staff, so I need to wait until he is more advanced and hopefully more manageable.
If you do not have the DPOA I would do everything in my power to get it.
You are entitled to your own life, only child or not. You are in way over your head.
Don't give up your life for them, they will be gone and you will have wasted years of your life taking care of them.
My mother is in assisted living, my mother is in memory care, my brother and I are taking care of them by having them where they are, they are safe, being well fed and given their medications as prescribed.
Admit that you cannot do this and move forward making a plan to regain your life. It is what it is, it will only get worse.
Sending support your way.
In someone who suffers from Dementia, one of the first things to go is the ability to reason and to be reasoned with. So don't even try Maybe time for both parents to go into an Assisted Living. Mom will get the care she needs and Dad will have the socialization and some independence.
I'm fairly certain if she gets admitted to the hospital after a fall, the IL will refuse to take her back.
We watch our LO's getting old and unable to take care of themselves. They, in turn, want to be as independent as possible (usually).
How much of that independence is 'fake'-meaning they are being shored up by MANY outside entities, Aides, housecleaners, food delivery, neighbors--sometimes it's literally taking a village to sustain that which is simply NOT sustainable.
We're right there with you, my MIL is now end stage Hospice, and while she THINKS she's in a NH--she's not--she's being propped up by her 3 senior citizen kids. I am sure she has absolutely no concept of the sacrifices being made by so many people to ensure that she can live at home. She can only 'see' herself and has no clue she is putting out so many other people in her quest to be HOME.
Since you are dealing with BOTH parents, that is a blessing and a curse. Moving them to Assisted Living at this point would be infinitely preferable to moving them to a NH at some later point. We missed the window of opportunity to do that with MIL when she was in the hospital last year after a nasty fall.
Easy to say, super hard to do. We 'failed' at it. I hope you're taking care of yourself. Even tho I am not hands on CG for my MIL the stress of my DH being there many, many hours a week is taking a serious toll on our marriage.
BTW--my mom threw a couple of things at me, in anger. I just walked out the door. I do have my limits. Luckily a plastic bedpan doesn't weigh much and didn't hurt when it hit.
Sounds like you either move both parents to an apartment style care center or you ride this old horse until it drops. And takes YOU down with it. Having physical/emotional problems yourself is a symptom of the situation.
Much easier said than done I know . I’ve already been there with my stubborn mother ( now passed) , currently have father-in-law with dementia in assisted living also oblivious to his condition . And now we are waiting for the fall that lands mother in law ( divorced ) in a facility . She refuses to leave her home.
Many of us learned the hard way that enabling these people gives them a false sense that they are independent . I hope you have POA for finances and medical. You can talk to an elder care lawyer about that . Your Dad should not be missing meals and meds because of your mother.
please get them placed in a facility . Mom may be needing memory care . Dad assisted living. They could be at the same campus and visit .
You could try your local Agency of Aging . They can send a social worker to help you with placement . If your mother ends up in the hospital , ask to speak to a social worker , tell what’s going on and ask them to have her placed right from the hospital . That’s what I did with my mother. I had an assisted living place picked out already and they had a bed open.
Go look at some facilities . Perhaps your father would want to go along and pick out his new home . I doubt your mother will be willing to . She will have to be placed . Good luck .
I cannot count how many hours I have spent straightening out the financial mess created when my father’s dementia set in much less the time spent doing taxes, paying bills, managing insurance and other healthcare issues. I live with a cloud over my head waiting for the “next thing” that I’ll have to fix and feeling guilty when I don’t want to do it anymore.
I do think they are stubborn, but, I have also contributed to the problem by propping them up.
You wrote this in May 2022:
"My dad also prefers to be nude because he says it’s uncomfortable and easier to go to the toilet. Then he started soiling himself. The breaking point was when he went out to get the paper nude!! The neighbor saw him and actually was very understanding. Their are kids on the block that could have seen him! His doctor evaluated him. So since then we have an aide that dresses him every day and every day she has to monitor his dressing and hygiene."
The "aide that dresses him every day" is actually only there Mon-Thurs? And what happens when the aide is NOT there? Is he still going naked and soiling himself?
If your parents are being left on their own when there is no aide there, can't you see that they need to be in a facility?
Don't take abuse. Her dementia has progressed to the point where mom needs to be in a facility and have 24/7 care. Find one. Get their doctor to recommend it.
Stop thinking you have to do it all. You're an only child, but that doesn't mean you have to sacrifice your life for folks who didn't plan well enough for their old age.
Now I've given you the plan - will you do it? Because a lot of people don't, and guess what? Then it gets worse. I wouldn't wish upon my worst enemy to be on the road where you're currently going. Time to head it off at the pass.
I wish you luck.
Please show this to both your father and mother and I want them both to know what I have told countless seniors just like your parents who refuse care or are stubborn and obstinate.
Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn.
Now, some advice for you. STOP calling them 4 and 5 times a day. It's time to start calling once or twice a week.
If your father and yourself need to understand that the person with dementia IS NOT in charge. You both stop obeying your mother's commands and do not allow her to decide anything other that perhaps choosing what flavor of ice cream she wants for dessert.
Take a step back. When your mother becomes too much for your fathet to handle he will reach out to you. Then the two of you can start looking at care options for mom and him.
You say you call all the time—are you out of town?
The AL facilities I saw were very nice, offered just what we needed.
The hurdle to get past with my parents (and I couldn’t place mom till dad was gone because of this) was that they wanted fantasy life, and not reality. They wanted good health, kids who lived next door and mowed their lawn every week...a life that didn’t exist anymore. And they refused to deal with the reality that other decisions had to be made. Then as they slipped into terrible health, and dementia, it was too late to make the decisions in a rational way—and I had to force a move after dad died and mom kept falling, unable to get back up.
Just go look! I know it’s overwhelming. Start the process—it was more doable, better possibilities out there than I knew.
You do what you need to do for their well-being.
Yes. It is hard and it will continue to be hard until you make other arrangements.
Do not call 4-5 x / day when no aide there.
People with or without dementia can be stubborn. With dementia, is / she could be 'worse' due to brain changes (dementia / confusion) and fear due to losing independence (as) she is already 'strong' and 'stubborn.' She'll go down fighting til the end. The KEY is for you to:
1) take control
2) Be compassionate and clear with setting boundaries
3) Tell her "I understand you do not want (caregivers / aides) ..." then do it anyway. You do not ask her or abide by your mother's 'wishes.' You get aides in there. Period. Have aides call you for updates.
You do not mention housing. It sounds like it is time to consider assisted living facilities. Be sure to have all your legal authority in place. And, have MD document dementia so you can legally make decisions.
You need to think over the longer term - perhaps they both have another 10 years... What are your plans with their home? Are you going to pay for 24/7 caregivers moving forward?
Gena / Touch Matters
Is your mother formally diagnosed with " dementia"; have her PCP provide a current " level of care needs assessment". Get a case manager, usually licensed social worker assigned to help you navigate both their assessed needs and options for care. Do not allow a " dementia" diagnosed individual bully and verbally abuse use and command what basically is an unsafe environment for everyone, her, your father and you.
Make decisions that are needed for their safety and well being as well as your own sanity, then implement them. Expect mother especially to not comply ; if she is becoming more aggressive or at any point tending toward violence or rage, call 911 and have her transported to ER.
She is unsafe to herself, your father and you even already with what you have described. Please remember that " dementia" patients cannot make rational decisions, cannot remember short term especially and may tend toward many unsafe behaviors. You may need to assess with social worker help placement facility options for her.
Also, you can always call APS
( Adult Protective Services ) and report the unsafe environment in the home. No one ever wants to take this step, but at least you can document that you have reported the unsafe situation.
Seeking help , input from an Elder Law Attorney should also be considered to help you understand and navigate the systems of responsibility, accountability etc for you and aging, ill parents .
Practice self care....
Get help, ASAP
Thank you,
Marcia
I agree with having to lie sometimes to get things done . I decided to think of it this way . Dementia is a poison to rational decisions . Lies is the antidote .
Also, check the medications she is on. This could also be affecting her. Avoid antidepressants and sleeping aides. This is terrible for people with dementia and can make the condition worse.
You must back away from any abusive relationship because you deserve better.
https://www.youtube.com/watch?v=L0MK7qz13bU
If after even 1 day without hearing from you numerous times they don’t call - I think that’s telling and proof that you’re the one suffering here by your own choice.
It’s hard - but they aren’t going to acknowledge they need help because they don’t - they have you. Take yourself out of the equation.
Get an Elder Law atty asap. Get POA, healthcare proxy etc.
If you were to visit a friend’s parents who were in the same situation—mom with dementia advanced enough to cause willful, aggressive behavior, what would you tell the friend to do?
This is not easy and these are not happy decisions BUT they are 90! They DESERVE to be in safe housing where their meals, meds, and hygiene can be taken care of. You also deserve the peace of mind that will give you. They gave you life, yes, but you should not give up yours. Besides this, You are not professionally qualified to take care of their needs at their advanced age. They will live longer more healthily and safely in a place made and staffed to provide for them.
As a family, you DESERVE to have time together without it all being about caregiving, anger and craziness. Sometimes the most loving (and right) thing to do is also the most difficult and painful. There need be no guilt in that.
I am always reminded of a gag on the Frasier TV show. Frasier was relating to Niles how their dad was being a smart a*s.
Frasier said the father quit laughing when Frasier said those two words: NURSING HOME
My mother is physically very healthy (in fact, her blood pressure is low while mine is rising). I got a wake-up call when we both went for medical check-ups and my doctor was worried about me; even the doctor's receptionist noticed I looked stressed. It is not so long since I was very fit and young looking; now I am a middle-aged woman with slightly high blood pressure, no freedom and living on junk food (she won't eat anything that needs to be chewed; I used to eat raw veg with every meal...).
So, this week I decided to make a few changes:
1. I designated Tuesday "Stress Day" and told her this; she wasn't happy when I explained that all the "niggly little problems" would be dealt with on Tuesdays (bills, ringing up utility companies, ordering vitamin supplements...);
2. I set aside Saturdays to meet friends. I didn't tell her this because she will say it's not essential - I told her I am doing a work-related course and have to attend;
3. I am joining a fitness class (she wants me to cancel that too and just go to the gym with her, where we'd normally spend five minute before she'd get bored and want to go to a cafe to eat cake...).
Her reaction was, at first, passive-aggressive ("You go out to meet your work colleagues and enjoy yourself. I'll be all right on my own...."), but, within hours, she had signed up for a yoga class (I had been urging her to do this for weeks - fingers crossed she won't get bored).
No doubt she will come up with dramas to prevent me going out on Saturdays and attending an exercise class, but at least I've set the boundaries and maybe she will get the message. I will leave if it all gets too much; she is well able to find people to do things for her.