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Both parents wiht dementia
Silverlining2
Posted: Tuesday, July 9, 2019 7:30 AM
Joined: 6/16/2018
Posts: 17


I have posted here before. I am trying to manage long distance care giving for my parents. My father is worse than my mother. My mother is father's caregiver. My mother is making continually bad decisions: firing aids, driving without glasses, lost 6 lbs, sends father to doctor by himself.  She now believes they only need a house cleaner. She just told me she was calling Terminix because they have fleas. When asked about treating the dog, she said that the dog had not been to vet in a long time.....several years?  He has not had stops, flea meds or heartworm meds for?  She sounds okay to the doctor and friends. Scratch the surface and you find out all the things I listed and many more.  My brother and I know we need to get guardianship but there is no documentation of my mom's problems. She will not relinquish control over finances, medication, appointments, car, etc.

I spoke to the elder attorney yesterday who gave me two options: get her admitted to geripsych unit for eval and medication, then get guardianship or get guardianship without admission.  This is a horrible choice. She can sound very normal at times.....but she is NOT. My brother and I are at our wits end. After firing their best caregiver/aid last week, they have no one to help. My mom lost her glasses last week and got my dad to drive after that. Now she is driving with a old pair. Yesterday, she went to the eye doctor for exam for new glasses. Her eyes were dialated AND she DROVE HOME.

I have only shared the craziness from the past week. She is now wanting to move to an assisted living facility where she is sure everything will magically get better. My dad wants to stay in their home.

Even if we get guardianship, they can refuse help if they are still in the home. I don't think they will have enough help or supervision in Assisted living.

My brother keeps saying he is not qualified to determine how much care they need or what to do....I tell him there is no one to make these decisions for us.

Neither one of us can deal with the stress of her continual phone calls and freak outs.

Any suggestions would be helpful. We do have a durable power of attorney.

 

 

 

 

 

 


TessC
Posted: Tuesday, July 9, 2019 2:44 PM
Joined: 4/1/2014
Posts: 4783


You have been a member of the forum for a year and I don't know how much you have read,  but if you have, you will have seen how common your situation is. I think the best thing to do is for you and your brother to get together and force an intervention. The worse is to wait till the sh#$ hits the fan and you are forced to do something by APS, but sometimes that is what it takes to get our parents to see they need help. I hope it doesn't come to that, so it's best to stop the train wreck before it happens and insist on some difficult changes for the safety of your parents.

 Your mother will never agree she has a problem, so you may have to go behind her back to get her care. So tell her that she either has an aide come in for "dad" or you'll be finding her and him AL. If she'll indeed go to AL, then tell your father he has no choice. You can find ALs different wings with increasing levels of care and that could be the kind you can place your parents.

I'm sorry, it is hard to become the caregivers of our parents but it's the way life goes for many of us.Even my healthy, smart FIL had to hand fed and bathed at the end of his life due to just being old. Good luck!


Silverlining2
Posted: Tuesday, July 9, 2019 8:46 PM
Joined: 6/16/2018
Posts: 17


Thanks. I have read the board a lot and I do know my situation is common. We have tried to get them agree to have supervision over their meds and having someone go with them to the doctor. They agree and the next week my mom has a melt down and fires the aid.

Then Sunday she says she solved the problem. They are moving to the AL...which of course has no memory care. Today, her yard man recommended someone to clean the house so she came over and cleaned while my mom took my dad to the neurologist. She called me and said she was so pleased that she found exactly the person to help her. I asked what the woman's background was and when she was coming back. She did not know.    But she can come whenever my mom wants her to. I explained that she needed someone to do more than clean.

I know my mom is going to have a complete meltdown. I know it is going to be awful but maybe this will help them to live a better and less stressful life.  I just hate that there are no better options to help them live peacefully to the end of their lives.


Stephanie Z
Posted: Wednesday, July 10, 2019 8:52 AM
Joined: 12/15/2011
Posts: 4216


Hi Silver,

     If you have been reading the posts here, you know that sometimes you have to wait for something bad to happen before you can step in. Unfortunate, but that may have to happen.

     Meantime, try to simplify things for them. It sounds like she is still quite functional in most areas. Are they taking meds? Can you lay them out weekly? or monthly, to avoid errors?  How is their hygiene?  Is the house dirty, or just messy?  

     Is it possible for you to get your mom to allow you to see her medical information?  If so, you might be able to contact her doctor and let him know about your suspicions.

Just a few suggestions,

Stephanie Z


raisinggirls
Posted: Wednesday, July 10, 2019 11:29 AM
Joined: 9/16/2018
Posts: 19


I would visit MC facilities near your home. Long distance is almost impossible and things will get worse.  The best advice I read here was to make decision based on their worst day. Also we as their children need to make those decisions for them. They aren't capable anymore. I felt like I was deceiving my mom but in reality, I was honoring her. She is thriving in MC....loving the routine, all the people and feels very safe. Her anxiety and confusion have greatly decreased since the move. I thought keeping her in her house with excellent caregivers was best, and it was for a few years. But when she wasn't safe anymore at night, this was the best option. I didn't realize the stress I was carrying.
Silverlining2
Posted: Wednesday, July 10, 2019 12:11 PM
Joined: 6/16/2018
Posts: 17


I live 6 hours away. If I were there, she would allow me to help with meds and go to the doctor with them and drive etc. She also allow my brother to do this. But the reality is both of us work and neither of us can just give up our lives to be their caregivers. They have the money to get whatever they need for care. Not unlimited amounts. However, they are age 89 and 92. They have enough for the rest of their lives.

 I have tried to get a geriatric case manger, personal caregiver and there have been two home health agencies that tried to provide staffing and supervision of their medical appointments and meds. They were in place and within a week or two she would tell them she could make it on her own and did not need them any more. My brother and I told the last aid to listen to her if she did this and to just keep going as scheduled. She ran her off too.

She complains about them not doing anything.....which is not true. Then she says they were so helpful. Then if they do something she does not like she complains bitterly about paying them.

She does not remember what they did. She finds fault constantly. She changes their schedule constantly. She can't plan more than a day ahead. She does not understand my dad needs a sitter to be safe. She cannot make a list of what she needs or wants to have done. She can't tolerate anyone taking the initiative to cook for them.  When they do she complains about the cooking and that she had to feed it to the dog.

I really think she is projecting her inner world on everyone else.  Some bad things have happened like her having to go the hospital and almost dying.  My dad had a stroke an has fallen. There is no one is there to help to get him up or to the hospital.

They have no one there to check on them. It is like two children with bad judgement and limited executive functioning skills who are completely unsupervised. Every day I feel like they are on the edge of disaster.

sorry to vent....I don't know how you all who live with LO's  who have dementia manage on a daily basis. It seems like every day is about crisis management. :- (

Thank you for the support.

It does help to know that others are struggling and making it through this nightmare.

 



Silverlining2
Posted: Wednesday, July 10, 2019 12:12 PM
Joined: 6/16/2018
Posts: 17


I live 6 hours away. If I were there, she would allow me to help with meds and go to the doctor with them and drive etc. She also allow my brother to do this. But the reality is both of us work and neither of us can just give up our lives to be their caregivers. They have the money to get whatever they need for care. Not unlimited amounts. However, they are age 89 and 92. They have enough for the rest of their lives.

 I have tried to get a geriatric case manger, personal caregiver and there have been two home health agencies that tried to provide staffing and supervision of their medical appointments and meds. They were in place and within a week or two she would tell them she could make it on her own and did not need them any more. My brother and I told the last aid to listen to her if she did this and to just keep going as scheduled. She ran her off too.

She complains about them not doing anything.....which is not true. Then she says they were so helpful. Then if they do something she does not like she complains bitterly about paying them.

She does not remember what they did. She finds fault constantly. She changes their schedule constantly. She can't plan more than a day ahead. She does not understand my dad needs a sitter to be safe. She cannot make a list of what she needs or wants to have done. She can't tolerate anyone taking the initiative to cook for them.  When they do she complains about the cooking and that she had to feed it to the dog.

I really think she is projecting her inner world on everyone else.  Some bad things have happened like her having to go the hospital and almost dying.  My dad had a stroke an has fallen. There is no one is there to help to get him up or to the hospital.

They have no one there to check on them. It is like two children with bad judgement and limited executive functioning skills who are completely unsupervised. Every day I feel like they are on the edge of disaster.

sorry to vent....I don't know how you all who live with LO's  who have dementia manage on a daily basis. It seems like every day is about crisis management. :- (

Thank you for the support.

It does help to know that others are struggling and making it through this nightmare.

 



Iris L.
Posted: Wednesday, July 10, 2019 11:53 PM
Joined: 12/15/2011
Posts: 15996


Silverlining2 wrote:

They have no one there to check on them. It is like two children with bad judgement and limited executive functioning skills who are completely unsupervised. Every day I feel like they are on the edge of disaster.

You've got it.  They need supervision.  Your mom has anosognosia.  She is unaware of her limitations and truly believes she is fine and handling everything.  You will have to learn work-arounds to get things done.  The members will show you how. 

Iris L.



Victoria2020
Posted: Thursday, July 11, 2019 10:32 AM
Joined: 9/21/2017
Posts: 554


Hello Silverlining2

Remember when you were younger and lived with your Mother and she came home, saw whatever you had been up to that day and questioned you, you answered heart thumping and things went good or bad after that?

Not gonna happen now. Mom isn’t going to snap back from this and say “Why did you sell the house? Pick that caregiver?” and give sane rational replies  or  give you what we ALL seek :   approval for our choices. “Thanks for seeing Dad needed a wheelchair, the walker wasn’t enough.”

The lawyer is right. You say what s/he proposes :

This is a horrible choice.
 
No— it is getting the    proper    documentation in order to PROTECT them. How else will it happen?  With her state of mind she can’t make safe choices. 

 “My father is worse than my mother. My mother is father's caregiver.”    She can’t be. You can’t let her personality keep him from safe care.

You are limited by time,distance and lack of POWER.
You need to get the documentation to be able to make the RIGHT calls to protect them both.

She left someone in the house —someone unknown—ALONE. Cell phones have cameras.  Just the fact your difficult mother liked this woman so much makes me wonder if the happy house cleaner  isn’t  ~very ~experienced at preying on the frail elderly.

TODAY ,  you have DPOA ,check with the lawyer-tell them about the house cleaner  see if you can  :

-put a credit freeze on their accounts right away . 
  
-Get her mail forward to you and change the address on all their accounts. Checks especially.

~Set up on line monitoring.

Discuss an getting emergency guardianship hearing. With the unsafe driving, the current lack of needed in home care, no one local there to monitor them, the great risk of financial abuse what are you waiting for? You could then hire a local private guardian to be employed by you and your brother to handle the day to day hiring of caregivers, over seeing home repairs  etc and make recommendations. They will be able to advise if staying in the home will be possible.

If you don’t go the emergency route now, you need to work non-stop to get the durable part- that survives incapacity triggered. NOW. If it takes a hospital stay- it does. Period.

Sometimes, when parents see you mean business and are taking charge they feel relieved and things go better.

“I really think she is projecting her inner world on everyone else. “  Your mother’s brain is impaired, you can’t get rational responses out of it anymore. It is not a solvable puzzle.

You and your brother need to supply ALL the rational thinking for them. Please stop letting your mother’s strong personality keep her unsafe while you try to please her.  Your father and the dog are at risk too.

You need to go all in on this, half way measures were tried and failed. Good luck.


Peter5
Posted: Thursday, July 11, 2019 5:00 PM
Joined: 5/30/2013
Posts: 1086


Victoria has given you very good advice.  No matter what steps you take, just remember that you will need some kind of local care manager to oversee their daily care.  It is just not possible to do this from a distance.  This will also be helpful if your brother is reluctant to make decisions.
 
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