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Perhaps you can try to reword the term "aide" into something more desirable - and maybe she'll become more receptive.
Wishing you all the best !
I would find a companion, introduce her to mom and let them develop a friendship. Then she can visit with mom, regularly and if possible, take her out. Mom doesn't need to know she is a paid companion.
Your dad matters too and you do not want him to become a statistic because he can't get away and take care of himself. 40% of caregivers die before the person they are taking care of.
I would tell my dad that this needs to happen and it needs to be at least once, if not twice weekly.
That's my opinion on the matter.
Edit: he should also have her seen by a geriatric psychiatrist to get her on some meds to calm her down. It's not good for her to be upset all the time.
Good for your dad for getting out. But it sounds like leaving mom alone is NOT a good idea. So, start with a person that is there to clean the house. This could be their real job or just a term to not have her think that they're there to take care of her. She could do some cooking. Laundry, etc, etc. Once mom gets used to her, she can shift into more caregiving and less other things so dad can get a break and do some things that he likes to do.
Crass as it sounds, a person with dementia is regressing to a place where they can't make the decisions, much like a young child. A child gets to choose between the red shirt or the blue one, but they don't get a say in whether someone comes to stay with them or where they live.
It's time for the adults to take charge. It's overwhelming for your dad, so perhaps you and your sister can take some of the pressure off by deciding this for both of them.
Agree. The adults who possess good reasoning have to reason for those lacking it.
Dad will need to adjust his thinking. Try this..
He needs to take the wheel on this one as Mom cannot drive safely.
"I don’t think it should be entirely up to her".
Correct. The help is for BOTH of them. To enable HIM to leave the house with peace of mind. To increase HER safety.
If Mom cannot reason that, has become selfish as they do, explain the help is for HIM.
I keep telling my LO this. Everytime the other cancels the support, attempts to cancel, fusses, tantrums etc.
It seems in my case, a long standing habit prevents the sensible one overruling - he really dislikes seeing her upset.
So. To be blunt... I say he has to toughen up.
The options are;
Option 1
Arrange the Aide.
Mom gets upset.
Dad feels a bit bad.. but Mom is left at home much SAFER.
Option 2.
No Aide.
A tantrum is avoided.
Dad feels slightly better, but then Mom is left home alone, distraught & panicked + left UNsafe. Dad feels bad about that.
Mom gets upset EITHER WAY.
Dad feels bad either way too (well until he understands..) But option 2 is SAFER.
Put those options to your Dad.
PS +1 speak to the Dr about meds for mood
do what is best for your family
Please think about your dad's mental and physical health as well as the rest of the family. Your mother will sadly never improve, but your father might get worse. There have been cases of caretakers dying not long after their wards because their bodies couldn't take the strain anymore. The caregiver is a must, otherwise, it's the nursing home. In the end, you are the adult in charge, not your mom. I don't know how advanced her condition is, but my grandmother who was in the early stages would have understood that it's better to have an assistant than to be forced to move to a home.
Your father needs to cut her down straight away with some tough love. He needs to stop letting her control his life. He can go out anytime he wants and for as long as he wants. The "You're supposed to take care of me" does not mean your father has to become a slave to her abusive neediness. Yes, a person can use being needy as a form of abuse and manipulation. This is my mother to the letter.
She needs to be made to undertand in plain language that she can either get help for her depression and anxiety or lose her family. Your father should bring up the possibility of divorce. Then see how fast she starts curbing her behavior. She will learn to keep her abusive neediness in check if your father and her family stops humoring her and starts giving her the tough love she needs.
My mother doesn't have dementia but has depression and anxiety. She also refused to ever seek out mental health treatment for it. That's not my fault. It's not your father's fault or yours either. Your mother has no right to ruin your life or anyone else's because of her choice not to seek mental health treatment.
Tough love, my friend. Then even go Grey Rock if you have to. Good luck.
Have you paid a visit to a Geriatric Neuro Psychologist? Perhaps, a little bit of medication for anxiety or whatever the doctor recommends.
Sometimes just a small dose of something can make a good impact.
It's difficult when you have one elderly parent caring for the other elderly parent.
Oftentimes, the person who is ill cannot see that help is needed. They sense something is not right but I believe in calling on the troops. All hands on deck.
You need to build a team. The longer this goes on, your loved one ages and basically you are going up against old age. Usually, by the time they hit 80 there is more than one health problem to deal with.
The fact that you mentioned your mother was not a combative person at all prior to her diagnosis makes me think that how can you mother make decisions for herself. Her mind is aging. The brain is aging and she may think her husband is leaving her and going out without her and having a good time.
One morning a week respite program is not a bad idea either. Something in the neighborhood that provides breakfast and a hot lunch. There are some wonderful facilities with hard working people.
I can only imagine what it's like for your father to bathe your mother or shower her. Hopefully the bathroom is handicapped accessible with a shower chair, nozzle, etc.
You can have Mom' PCP do an assessment and write the scrip. That way if dad is ever on his back you have a slot for Mom in a pinch.
I hope that I was of some help to you. You want to do right by both of your parents and you sound like you are level-headed and a good daughter.
If your Mom's personality is incredibly changed, if, that is, she is not the woman your Dad married and lived with all this time, it may be time for the family to conference about LTC placement for her. It isn't right that your Father is expected in his elder years to have to try to maintain care for her that he may not be physically or mentally able to do.
I would conference with the family (Dad included) and perhaps seek eval of either licensed social worker or neurologist to assess what is either here or may be coming for you as a family.
I am so sorry. You have described what is certainly the case for so many. You aren't alone. I know that doesn't help because some things just don't have good answers.
Mom should also not be left alone.
Bring in the caregiver as a "friend" of yours. Your "friend" on day 1 can help dad with cleaning, doing laundry and just chatting with mom.
On day 2 dad can offer some lunch to your "friend" (Sue) and realize he is out of bread. "Sue" can stay and chat with mom while dad runs to the store for a loaf of bread. Dad can be gone for 30 minutes or so.
On day 3 dad has to get a haircut and will be gone for an hour or so.
Mom will get used to "Sue" and be more accepting of the help.
So, you and your father/ family should definitely confer with her Physician for further referrals and assessment of your mother's needs for caregiving; and then make the decision best for All of you to get help with her. She will most likely be resistant regardless of who , when or where or how help us implemented so go ahead with whatever decision you and her POA decide is best after conferring with her Physician and/ or other specialists ( i.e . Geriatric etc).
Getting help " in the home" with her will require you being able to share with potential caregivers the pt behaviors etc and, for you to be able to select best; or perhaps it will be a " adult daycare" program that she could attend certain days of week outside the home to give your father and you all a break. " The ARK" Programs and others specialize in dementia care. Speak with Physician and Geriatric specialist in your area for help.
Practice good self care including not listening to her verbal abuse, ranting and raving...if you hang up the phone or redirect the conversation on phone or in person or walk away, she may be able still to associate her behaviors not being tolerated.
All that said, she is most likely also grieving the dramatic changes that she is experiencing and is both fearful and angry about these.
You, her husband and family are all also grieving these changes and the " loss" of the mother and wife you have all known.
Also enlist the support of your and her pastoral clergy support.
Practice good self care.....you will need all the care you can get from many different disciplines to help carry you all through the journey ahead.
Make decisions for your mother . She cannot make best decisions now.
Bottom line - you need to step up and take control. Stop letting your mom decide everything. She's mentally incapacitated so she should not be deciding the course of action here. Get legal power so you can navigate the medical road ahead with more leverage.
Talk with your dad about staying in the house or moving to a different facility that offers Independent living.
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
This loving soul (her husband) needs support - and a break.
- Support your dad to walk away or shift out of her visual site when she is screaming / activated. Encourage him NOT ARGUE and NOT 'stand there' and take it. He can only take so much - as all of you can in this situation.
POA status is essential and needs to be in place yesterday. Get an attorney to help you make this happen.
* Consider medication - is she taking anything for anxiety ? depression ?
* You need to get someone in there. Period. End of discussion - although the beginning of this discussion.
- Try to find someone who is confident; won't take the abuse personally and will set limits.
- I would ease someone in, i.e., not have her / him do 'much' [the first 1-2 days or so]. Just be there. Let your mom warm up / get used to this person around - more so on her terms (she is frightened/fearful / bitchy / screaming / angry - this is to be expected].
ANY PESON EVERY PERSON DOESN'T HAVE TO STAND THERE AND TAKE IT. Say once "If you continue to scream or xxx, I will walk away. And then do it. She'll get it in her brain (somewhere) that her strategy isn't working. And, if she doesn't so be it.
Do not allow yourselves to be PUNCHING BAGS. This requires tough love.
Care provider could clean up the kitchen so she'd know they are there - and not bother(ing) with her.
SHE IS FRIGHTENED and acting out old (workable) behaviors to meet her needs. This is to be expected.
* Boundary setting is critically important / needed. Even with forms of dementia, I experienced client(s) to shift their behavior when I shifted / changed mine, i.e., set limits / boundaries / said I would give them a time out - and did (5 minutes to the rest of the day).
A strategy I use with a narrarsistic personality (in memory care) is saying she is 'in charge' , compliment her all the time... and letting her know she is helping staff to do there job. Ask her to 'report' back to you her observations. Tell her the help is for her husband, not her. Help your mom feel she has a job to do that is important .. so it fits with how she feels about herself.
Yes- of course the entire support system is affected. This is why:
You need to do what she needs and not allow her to dictate the care she needs. And others' need her to get this care, too. Everyone is drained and emotionally spent - and this will only get more intense if you do not set limits.
- Tell her what you are doing. (i.e., Getting helper). Do not argue. If she responds as she will - harshly, say ONCE I hear you . . . and then move on.
- She needs to realize that you are in control and doing what you feel she needs. She may or may not get it. Do not wait for her to understand (she may never get it). The changing brain / chemistry requires YOU to take control and care for her as she (and her husband/you, your sister, and your dad (?) needs.
Gena
Touch Matters
when you want her to decide something, give choices, like 'do you want this one or that one? not open-ended decisions. I don't ask my dad what he wants to wear, i say 'which of these two shirts?'
Then plan outings/activities that you know she enjoys and have the aide take her. i don't mean you should be dictatorial, but you have to take the lead. When my mom needed help in the house, i said it was for daddy. she was ok with that.