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RudyVee Asked June 2021

What to do if Dad has given up on my mother with dementia?

I am an only child. Moved to Houston from my home in New Iberia, La. in Mar 2020 to care for my Mom (Dementia, MCI, and chronic incontinence). Dad has just given up on my mother - who is a lot in this stage of her Dementia and MCI, coupled with chronic incontinence. She's become very moody and doesn't want to accept the help in the mornings and evenings that she needs from him in regards to cleaning up, taking off, and replacing pull ups/pads; washing, brushing teeth, dressing, etc. He just makes sure she has everything she needs in the bathroom and now leaves. She is resistant on having me in the bathroom with her. If she washes, takes off a used pad/pull up, cleans, is now what "I" hope for. Best "I" can do is ask her the questions she hates; "Are you wearing a pad," "Are you sure," "Did you brush your teeth," etc. Most times she has forgotten the pad and gets impatient with having to go back in the bathroom to do it all over again. This "process" usually takes anywhere from 1:30 -2:00 every morning and evening. She is just ornery when it comes to someone telling what she needs to do - because she can't remember to do so? (MCI)


It's just really tough right now. Before you ask, "I" have set up in home health care on, get this, 3 occasions. The first, Dad allowed her to cancel WHEN THE LADY CALLED TO TELL US SHE WAS ON THE WAY! Smh. That was about 9,10 months ago. Next time I set it up, again he "allowed" her to change her mind before she was scheduled to come - this was the time when the "Area Agency on Aging" denied me another chance to get benefits. I understood.


The next time "I" set up healthcare was with Medicare and a highly rated agency dedicated to home Healthcare. I vetted the young lady that was selected. She was perfect credentials wise. She washed her hair for the first time in years! (Yeah, Dad hasn't done it. Won't bathe her either? But he is an INCREDIBLE husband and father. He has recently had a LOT of health issues. During this time that I have been here and Covid, my Dad has been hospitalized (4) times with heart related issues. And now has a pacemaker. Dealing with Mom during those times was almost too much. Especially when we went through the unbelievable winter storm here in Houston in February with no running hot water and no lights for 2 days! It was awful.) The lady did an uh-MAZING job with Mom. Mom had nothing but wonderful things to say about her.


Later that evening, we noticed Mom might be having yet another UTI. So I was able to schedule an appointment for the very next day. She had a really bad infection that led her Gyno to refer to a specialist later that day. So after THAT appointment, which led to meds and Mom knowing she had an infection - out of nowhere, after we got home, Mom told Dad she didn't want anyone back in the home to wash her? And you guessed it, he allowed it - again! I was so withdrawn after that.


So here we are, falling apart. I'm 58 and tired. Sleep disorder and 4 screws and 2 cages in my back. I deal with "permanent, chronic nerve damage" daily on a 8 level. But it doesn't limit me. It hurts all the time, but I must go on. I do all of the cooking and running around. I clean the bed and bathrooms daily and administer their meds. My Dad requires vitals taken (BP, Heart rate, O2, and Temp) 2X's/day. I cook (2) meals/day about 5x's/week. He manages to get in some light yard work some days. He has glaucoma, so he rarely drives. It's just not best. I wake with him at 5a everyday to make sure he's stable. Some mornings before the pacemaker, we were dealing with BP around 85/45. There have been (3) EMS trips during this period that I have been here since Mar 2020. I have only been back to my home for a total of 2 days on (2) separate occasions. One trip was a same day turnaround. I haven't been home since September 2020. I look forward now to 6p daily when they usually go to bed. I also cook and care for my 11yo Yorkie. I'm tired - mentally and spiritually. Sorry 4 the vent

Beatty Jun 2021
Has your Dad "given up"? Or *accepted* he cannot change or fix her.

Although not doing things as you would, he is her spouse, not her nurse. He is choosing his battles & stepping back from some.

Sounds like he is worn out already - becoming her nurse/caregiver may just kill him.

I admire you willingness to fly in & roll up your sleeves to help them both. With their battle of old age & illness. Love, dedication, bravery.

But ask yourself if it is worth it if YOU die in the attempt to save them?

Have a good look at your folk's living situation. They are already living in an assisted living - where you are ALL the assistance. Use your skills to build either a home care team around them or find alternative, appropriate living accommodation for them before you fall ill. Please.

AlvaDeer Jun 2021
Quite honestly, and very sadly, you are now in a position of knowing that your move from your own home may have been a grave mistake. I am not certain how much is undone back home, nor how easily to can return. If you are exhausted at your age you can only begin to imagine the exhaustion of your father who is was in charge of this poor woman who bears no resemblance to his wife or your Mother. She is utterly changed by her disease, and things will not become better. As Beatty here says, "There will be no solutions as long as you are all the solutions".
I think it is time now to consider placement for your Mom in memory care so that you and your father can continue on with the lives you should still have, with visits to your Mother. I know my own limitations, and would have known I could not for a day take this on, but I was a nurse and know what it drains from you, no matter you love the work and your patients to do this work three days a week, let alone attempting it 24/7, no matter having help as you describe.
It can only be your choice. I know you know the options that exist. None of this will get better. I am so very sorry and so wish you the best.

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SnoopyLove Jun 2021
I don’t think your dad has “given up” on your mom. It’s that the situation has become impossible for him to manage, and he has given up pretending otherwise.

I am so sorry you are all suffering like this! Love just isn’t enough, unfortunately.

lealonnie1 Jun 2021
Neither one of you can handle mom in this state of dementia, so she either needs in-home outside care to come in on a daily basis (with no choice given to her on the matter), or she needs placement in a Memory Care Assisted Living residence where you and dad can go visit her and become son & husband once again instead of caregivers. Dementia normally reaches a point where in-home care by the family becomes impossible b/c the patient becomes 100% non-compliant & argumentative, as you're beginning to see now. "MCI" is no longer relevant with mom as she's moved way beyond 'mild cognitive impairment' now & into full blown dementia.

Ideally, you can find an ALF that has a Memory Care wing b/c your dad may need the assistance himself one of these days, based on his health history. He can live in AL while mom is next door in MC, although it may be possible for both of them to live together for a while. Their house can be sold to finance their stay. My parents had to do this very thing as their health went down the tubes and in home care was not possible. My dad passed but mom is 94 now & living in Memory Care herself, requiring a whole team of people to care for her with advanced dementia at play & being wheelchair bound & incontinent, etc. If she's still alive when she runs out of $$ to private pay, I'll have to apply for Medicaid to fund her care in a Skilled Nursing Facility (I am an only child too at 64).

Wishing you the very best of luck managing a difficult situation & taking care of YOURSELF in the process. Don't discount the need for that b/c what if you break down & get sick? Who takes care of the parents then?

97yroldmom Jun 2021
For your sake and theirs you need to help place them.

until then….
Have a heart to heart with your dad. Tell him you need to manage the outside help.
Make sure they have your phone number and know that the caregiver knows not to take a “no” from anyone but you. They shouldn’t call the home number, they should call your number. Ask them to give you a chance to help them gain compliance.

YOU and dad have to remember that mom CANT remember and so what she says one day will be different the next day or in maybe 15 min.


You need to take away ALL your moms panties and replace with pull-ups.
You can try taking each pair of panties and attaching a pad inside them in advance if a pad would truly take care of everything for now.
Anytime you are asking her a ‘yes/no’ question that has consequences, rethink your approach. Instead of do you have a pad on. It’s here’s your clean underwear (that you have already put the pad in).

Again, YOU remember that she CAN’T remember (except every now and then when she actually does remember).

Your dad has been through a lot. He may have cognitive decline of his own. But even much younger people will think their LO is being lazy or is “doing it on purpose” because they are too close to the situation, burned out and can’t see that the LO has lost the ability to cooperate or care for themselves.

Make sure they have their paperwork in order. POA, WILL, ETC. visit with a certified elder attorney well versed in Medicaid should they need it.

While your help is very necessary, it’s also very easy for their skill set to be at a lower level than you realize. In other words the old “enabling is disabling”

And RudyVee, what are your plans for the hurricane season?

I know how hard what you are doing is. You really need to make sure dad understands what you are able to do and not do. Don’t oversell it. If he expects you to watch out for them, he mustn’t make it harder.

Bethanycares Jun 2021
Several things to consider:
1. your Dad is worn out. He is so sad/angry, probably mourning the woman he used to know.
2. your Mom is at the stage where her dementia is in the defiant stage. This happens.
3. you are frustrated that 'things' arent being handled propery, AND you are losing both your mother and your father.
4. Dad is the roadblock here, even if he goes off into another room.
5. first, do a little research on 1 0r 2 good facility(s) near your dad's home.
6. time for a sitdown with Dad and come up with a plan.
7. Move your Mom to the decided facility. Your mother will get good care, and hopefully your Dad will come back to life.
8. support both of them with your love, prayers, greeting cards, flowers, etc.
9 this is not perfect. life is not perfect.

Maple3044 Jun 2021
Since you are in Houston, Google Brookdale Assisted Living/memory care facilities. My stepmom lived in assisted living and my hubby is going to MC in August for respite. The facilities and staff are wonderful. Some of them have 2 person apartments. At the time my stepmom was in AL, there was a scale of services she needed. Help with toileting was X amount per month; medication management, X amount; help dressing, X amount. There was a maximum amount for these services.In 2018, it topped out at $1700 month, even if she had needed every service they provided.
I took some of her own furniture so she felt like there were familiar surroundings. Your folks would probably be able to share the apartment. Yet someone else would be taking care of your mom 's personal care.
The facility has activities all day long: they scheduled shopping trips and restaurant outings. This might solve your problem. Sending a huge hug to you.
RudyVee Aug 2021
Brookdale, huh? Ok. Are you sure it was just $1,700/mt total? Reason being, and I am SO tired that I'm probably confused, but I thought that I spoke to them already here? As you know, unfortunately for them my Dad doesn't make a lot of money with his annuity. Roughly $42K/yr. This doesn't qualify them for Medicaid. And the facilities that he can afford are places that do not "appear" to be satisfactory, or in a less than desirable part of town. I've always abided by my own adage that, "the quality of service is directly related to the location of said services." And it hasn't failed me yet. And yes, I do know that there are some exceptions to the rule. But your advice gives me hope. He cannot keep this up. She's in a very bad stage of denial and acting out when it comes to what is needed for her hygiene health. She says she doesn't need to wear pads because, "I don't bleed anymore."🤷🏾‍♂️😓😓😓

I will call them first thing in the morning. I gave up trying with facilities because of the cost. I am playing Lotto just praying for luck. Smh...

Thank you SO much and may GOD bless you and cover you and your family from these temporary, perilous times we are living in at the moment. I believe in the power of fervent and effectual prayer.

HIS,
Kevyn

Psalms 71:12!!!
Midkid58 Jun 2021
Oh my heart--you sweetie.

Time to move BOTH mom and dad to a care facility, or YOU will precede them in death. It's very real--the stress will take you down. But you know that, b/c you already are there.

Start checking into facilities that take couples--move them to an apartment in a facility that will give them 'togetherness' as they seem to thrive on that, but also one that will brook no 'Don't come help us today, we're fine'.

That's just my 2 cents. One elderly person trying to care for another rarely has a good outcome. The 'sicker' of the two often outlives the 'carer'. And it sounds like you have had your own set of problems. As someone who also suffers pain on a daily basis, you have my utmost sympathy.

CarolLynn Jun 2021
When my mom and I checked my dad into Memory Care, the nurse there asked me what helped me make the decision. I said, "I trying to keep my dad's disease from killing my mom."

I think that's where you are right now. You're just going to need to get your mom placed, even without your dad's cooperation, in order to save whatever life he has left.

DKelso34 Jun 2021
I am suprised you have held out this long. You are worn out and are working your way into serious problems. You will start resenting this job. You will become impatient and can become neglectful and abusive in your neglect. Get help in alternate care and let a expert help you with "how to deal with it". Do not "break yourself down".

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