RSS Feed Print
There Can't Possibly Be A Worse Patient Than My Father...
STRW411
Posted: Monday, May 20, 2019 9:58 PM
Joined: 5/20/2019
Posts: 2


Hello everyone!

I decided to join and post because I'm hoping someone out there has input into the unique personality that is my father.  I'm know that every caregiver has challenges of varying difficulty, but he's a case unlike any that I've read about.

My father is 70 years old with early onset (my guess is late Stage 5).  He was diagnosed four years ago, and it's been a swift progression into decline both physically and mentally, getting worse by the day.  My 75 year old mother is his primary (and sole) caregiver.  She gets assistance for a few hours a week, but she's essentially on her own.  

This man was a workaholic his entire life.  He loved his profession, and it's all he's ever wanted to do (since age 15).  Work around the clock, seven days a week, morning and night.  He's reached the point that he's a danger to himself and others when it comes to his chosen profession, which obviously he doesn't understand.  He's no longer allowed to work in any capacity. He fixates on this from the minute he wakes up until he falls asleep.  All day long, every day, he demands to be taken to work.  He feels he's being held captive and can't earn a living.  He doesn't have one pleasant moment the entire day. 

With that said, he was never pleasant to begin with.  He's been verbally abusive and anti-social for as long as I can remember.  I have very few positive memories of him.  He doesn't enjoy conversation, and doesn't enjoy visiting with family...either in sickness OR in health!  He made it 70 years with no hobbies or interests outside of work.  Absolutely zero interest in TV, music, art, sports, games, social interaction, etc. He just wants to work and be left alone.  

I go visit two or three times a month, and the entire time I'm there, he's verbally berating my mother.  She tells me it's like this around the clock, even in the middle of the night.  There's only so much deflecting someone can do, and none of it seems to work.  Deflection and misdirection works for only a minute or two before he comes back around to his anger. 

When we try to give my mother a break to get out of the house (and out of his presence), it's a double-edged sword.  He fixates on her absence the entire time she's gone, and the verbal abuse is 10x worse when she returns.  It makes her not want to leave at all.  Even leaving him for an hour or two gets him enraged.  He doesn't recall repeating stories, or where the restroom is in his own house, but he can NOT forget that she's left him.  It's like he can only remember the things that make him angry...and he can go days without forgetting those things.

As far as I'm concerned, my father "died" a few years ago.  My only concern now is with my mother's well-being.  She's the polar opposite of him, and would like nothing more than to spend these years with her grandchildren, relaxing and enjoying retirement. 

We are heavily leaning towards putting him in a home ASAP.  I've read stories about caregivers fighting to keep their loved ones at home as long as possible, and I envy their efforts, but there's nothing positive coming out of him staying home.  He doesn't recognize the house, or his wife (he know's she's familiar, just not who she is), so there's no comfort for him in this dwelling other than some familiar photos on the walls.  I'm at the point that I feel like getting him into a home is the only way we are going to save my mother from this nightmare.  I don't know how much longer she can handle him.

Looking for insight and advice from others who've dealt with such a unique and unpleasant personality.  And, is there such a thing as "too soon" when it comes to putting someone in an assisted living facility?

Any input is welcomed!

Thanks for taking the time to read...

RA  

 

 

 

 


citydock2000
Posted: Monday, May 20, 2019 10:38 PM
Joined: 9/7/2017
Posts: 796


Nope!  Sounds like a great plan.  He's unhappy where he is, will probably be unhappy in AL or MC.  Save your mom, she doesn't deserve this, let her have her life back.  

 


Victoria2020
Posted: Tuesday, May 21, 2019 3:52 AM
Joined: 9/21/2017
Posts: 838


Have copies made of the pictures he likes and hang them in his new home.

Your mother earned some peace and her grandchildren a rested grandmother.

See if his dr would recommend a medicine for his anger, he will be harder to place and keep placed if he is verbally.....not nice.

It is not "too soon" to save your mom.


harshedbuzz
Posted: Tuesday, May 21, 2019 5:13 AM
Joined: 3/6/2017
Posts: 1642


I also had a difficult parent. It complicates things. FWIW, my aggressive and unpleasant dad was at his worst in stages 4-early stage 6. It was really hard on my mom, especially before they moved back to the area where I live.

Has he seen a geriatric psychiatrist? This was the single best thing we did for dad who earlier stages of dementia featured anger, aggression and verbal abuse. I suspect dad always had some mental illness (possibly bipolar or perhaps a milder presentation of sociopathy); appropriate medication took the edge off the anger, depression and anxiety that drove his worst behavior. I wish he'd had meds as a younger man- his life would have been easier. A well chosen medication protocol will help him make the transition to a residential memory care community. 

How does you mom feel about moving him? My mom fought me at first around placing dad. I feel like our society expects caregiving of married women in this situation in a way they don't of husbands or adult children. I reminded my mother that if he fell to my care because he she went first, he would be in a nursing home before the day was out. And yes, I had that Plan B set up. I think she needed "permission" to let others physically care for dad; I heard a lot of "I can't just re-home your father" at first. 

Getting dad placed could be a challenge if he is uncooperative and aggressive. Mom's first choice MCF did and interview with dad and declined to offer him a bed. We ended up with my second choice which turned out to be excellent. Even dad raved about how kind the staff was. My first choice was the local VA Home. It was very well run and I felt the very masculine atmosphere would suit my misogynistic father. If dad's a vet, this might be an option if they don't have a long wait list. 

Another option, if he gets really out of hand aggressive, would be to have him admitted to a geriatric psych unit for medication management and transition him to a MCF from there. They will have social workers who can help around placement. 

Another thing that sometimes happens, it did for me and for my neighbor whose dad had dementia, is that some time around mid-stage 6 our PWD who had previously not been a nice person became very sweet and loving. 


kim1960
Posted: Tuesday, May 21, 2019 6:53 AM
Joined: 5/21/2019
Posts: 2


HarshedBuzz, may I ask what meds worked for the anger?  My dad who is in MC is progressively acting out his anger (presumed LBD) and hitting people (staff and now a resident yesterday) and we are wondering if he'll be kicked out.  They have a psych nurse who now comes in once a week, and he even spent 8 days in a geriatric psych hospital, who tweaked meds and came out of there calm but is now agitated, hallucinating, delusional, and acting out his anger.  He is on a boatload of meds but a horse tranquilizer might not do the trick.  We hate to think what my mom went through before she died 5 years ago.  He was an angry guy then.  To the OP, sounds like your mom would benefit from him getting assessed medically and placed in an appropriate facility.
harshedbuzz
Posted: Tuesday, May 21, 2019 7:29 AM
Joined: 3/6/2017
Posts: 1642


kim1960-

Dad was on Seroquel. Initially hospital attending neurologist gave him 25mg in the evening but only because residents and I shared how awful dad was in the evenings. His geripsych agreed to add a second 25mg in the mornings. FWIW, this would be the usual starting pediatric dose for bipolar. That said, the use of antipsychotic medications is controversial in those with dementia; it carries a "Black Box Warning" and is an "off label use".  

A geripsych might be best to prescribe because different dementia respond best to different medications and psychs are the experts in psychoactive medications. 

HB
STRW411
Posted: Tuesday, May 21, 2019 8:28 AM
Joined: 5/20/2019
Posts: 2


Thanks for the feedback everyone.

The medication situation has never been consistent with my father, and I don't think it ever will be.  My mom has taken him to multiple doctors, but he has stomach issues and meds often complicate that.  I honestly don't know the full schedule of drugs he's been prescribed on/off over the last few years, but I know most are quickly stopped because he's in so much pain from taking them that he can't eat.  No chance to find out what's effective when they simply can't be taken consistently (or at all).

Because of the stomach issues, he also barely eats.  He's lost a ton of weight and looks like a skeleton now.  He subsists almost entirely on bland health shakes, with the occasional unseasoned chicken and potatoes.  Additionally, he's got what they believe to be nerve issues causing him constant pain, and doctors have been unable to fix that for him.  All of this combined leads to a horrendously awful quality of life, and I'm sure contribute to his constant agitation and frustration. 

I do know he has a sedative on-hand and uses it when the situation has escalated beyond her ability to control.

My mother is a bit resistant and guilt-ridden about putting him in a facility, but she's starting to come around as her own quality of life evaporates.  As someone mentioned above, there is NO WAY my father would be caring for her if the roles were reversed.  He'd have put him in a home the first time she repeated herself.

RA


Johns baby girl
Posted: Tuesday, May 21, 2019 8:28 AM
Joined: 2/26/2019
Posts: 56


Definitely work on meds first.  If he gets kicked out of MC because of behaviors (yes, it happens often), you will be dealing with a lot more anger.

 


Jo C.
Posted: Tuesday, May 21, 2019 10:28 AM
Joined: 12/9/2011
Posts: 9935


Hello RA and welcome to the Forum.  This is quite a challenge being faced considering the GI issues on top of the behavioral issues.

First thing that comes to mind is a medical"care team."  Has he had his GI issues diagnosed for causation?  If his dementia specialist, primary care MD and GI doc if necessary work together as a team, they may be able to prescribe for him in order to restore quality of life for him and your mother.  I wonder if he was ever diagnosed with a mental health issue prior to his onset of dementia which would make him a dual diagnosis presentation for the behavioral changes being seen.  One may also wonder if perhaps he has FTD rather than Alz's; sometimes diagnoses change, the dementia specialist can reassess that.  In such a case, meds would be a bit different.

If your mother continues under such severe stress, this may begin to take a toll on her health.  If placement must be made, then she will still be his wife and his carer; just in a different sort of way.  She can visit and be with him as often as she wishes; but she still has peace and tranquility at home and can peacefully sleep nights.  It is not abandonment; just a different way of caring where she will be able to recoup her health, but still be wife to her husband.

The medication your father is on probably needs to be reassessed to see if it may be contributing to his dementia behaviors and also to his ongoing GI issues.  That of course will take some professional MD assessement and input.

NOTE:  The Alzheimer's Assn. also has a Helpline that can be reached at, (800) 272-3900.  If you call, please ask to speak to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us in our problem solving.

This is a difficult situation and I so hope that some assistance will soon be helping.  Let us now how all is going, we will be thinking of you.

J.


D in law
Posted: Tuesday, May 21, 2019 10:45 AM
Joined: 4/24/2017
Posts: 564


Just wanted to stress the point about placement that most places will want certain behaviors under control.  Your mother could end up being called to constantly be there if the staff ends up not being able to handle him, and gosh forbid ask him to leave.  It's best to get his meds checked/evaluated first and foremost.

Is there possibly anything around the house that you feel your father could do that would make him feel like he is working?  I'm not sure what he did.  The approach in asking him to help is key.  Just a thought, could you set up a large table where he could he stand (if he stood for work) or sit and get a huge puzzle and have Mom ask him to work/fix it?  It could keep him occupied for hours lending your mother a breather.  It may take some imagination to come up with an activity he can do safely, I just wanted to offer this suggestion.  Best wishes to you.


dementiadaughter1
Posted: Thursday, May 23, 2019 10:48 AM
Joined: 4/1/2019
Posts: 5


Hi!  I have a dad just like your dad! All my dad did was work, had his own business and worked practically 24/7 and was never one to enjoy life - complete type A personality, always on edge, never cracked a smile, was short tempered, had no friends, and never had time or interest for anyone or anything besides himself and work.  He never once took a vacation and my mom, sister and I would go out of town on our own when I was growing up.  My mother was the polar opposite of my dad, she was a ray of sunshine, social, loving, nurturing and caring, had a great sense of humor, and just a fun and sweet lady with tons of friends and was a favorite aunt and grandma to all the kids.  Sadly she died of cancer four and a half years ago and my fathers Alzheimer's progressed rapidly. To put my dads workaholic personality into prospective, we knew my mom wasn't going to live for another day, but my dad went to work anyway and when we were told she had a few hours left, I actually had to call my dad to leave work to come to say goodbye and he arrived an hour later.  My dad is 81 now and during the last four years lived at home by himself and obsessed over 'looking for a job' and 'doing is finances' all day every day. It was obviously a disaster.

After a medical event in January, we realized that him living on his own was no longer safe and we put him into assisted living where his Alzheimer's progressed and he would call and cuss us out daily, and after two months there he was found in the parking lot one morning looking for his car because 'he had to go to work'. It took the staff over an hour to coax him back inside while he was being stubborn and cussed out the staff the entire time.  Because of his escape attempt, we moved him into a locked memory care facility on April 1 and put him on Zoloft to get him calmed down. His anxiety over not having a 'job' and 'not having enough money' was painful for everyone involved and the Zoloft has helped a lot. Now he thinks he works at the memory care facility.  I cant quite figure out why he thinks that, but when I call him in the evenings I ask what he did all day and he says 'I worked' and I just go along with it.  I too feel as though my dad died some time ago and deflection did not work and his anger, anxiety and difficult personality on top of the Alzheimer's just made everything way too difficult to handle.  He is unhappy in memory care, but he was unhappy anywhere because he is an unhappy person, so I just cant win. 

I hope this doesn't sound terrible and selfish, but my sister and I made the difficult decision to put my father in a home because while we have one victim of Alzheimers (my dad) we are going to do our best not going to be 'victims' too. The guilt and sadness that we feel is profound but we visit and keep in close contact with my father and he is safe and that is the best we can hope for and the best that we can do.  I think everyone of us is going to suffer and don't think there is going to be a happy ending for my father or yours, so I would advise to start looking into medication for your dad and homes for him as well, to take some of the burden off of your mom.  There are no perfect solutions but putting him into a home is probably the best one. 


basilia
Posted: Thursday, May 23, 2019 3:31 PM
Joined: 5/23/2019
Posts: 99


Greetings my dear

My name is Basilia Jackson a lady from U.S, i saw your profile and become interested in knowing you please contact

 me in my email address as a friend

     (basiliajackson028@gmail.com)