How Much of this Selfishness is Dad's Dementia....How Much is DAD?

by CraftDee
(Western Australia)

My mother and father were very good to us when we were young, and as "young marrieds". I have had a particularly close relationship with my Mother (my sister's relationship with both parents wasn't troubled, just not as close as mine)and got on with Dad okay, Mum was sharp as a tack. Dad was showing signs of problems with his memory as far back as ten years. Mum pandered to him all their married life, breakfast, lunch and dinner - clothes laundered, every need or "want" met without question. This continued into their (very long) retirement. My sister moved 400 kilometres away to start her own early retirement with her partner; I resented this a little as I had always been the "good" daughter, requiring little assistance from the folks, which was just as well as my sister needed "looking after" emotionally and financially many years into my parents retirement.

Just when it looked like it was time for the payback, she buggers off, it fell to me. I took on the role of taxi driver, taking them both to the increasing number of doctor/hospital/clinic appointments, dealing with the day to day struggles that old age brings.

Mum was brilliant, always grateful and only asking for help when absolutely necessary, so still okay, I live around the corner and work from home so I can juggle it. And I love my Mum's company, she is my best friend.

Still it's tiring. I tell my sister that Mum's life is getting difficult, my Dad has "bad" days with his memory and childlike behaviour. He is pedantic and belligerent quite often. Oh it's Mum says sis, she won't just let him relax, mmmm, you're not here how do you know that??

My sister came up from the country in July, my husband and I thought it would be a good opportunity to take a few days break at "our" cabin 300 km from home.

My sister was going back home on Friday, we would be back up Sunday lunch time... what were the chances of something going wrong in one day.

It turns out the chances were astronomical. My Mum, in an effort to remain independent had bullied or cajoled the family doctor into passing my Dad to drive (he was still not bad, but needed direction and instruction, driving in familiar places seemed okay.)

My sister left their place at lunchtime, Mum and Dad were going to the bank after cleaning up... Dad started the car, as usual, Mum went to get into it and somehow it moved, the door knocked her backwards, she fell without defending herself hitting her head on the driveway.

Mum managed to call my sister, she turned back, long story short I got the worst phone call of my life while 300 kilometres from home.

We immediately came home, the longest 3-hour drive of my life. half way back we were told there was no hope. My beloved Mum died of her injuries the next morning at 9.45, it was my privilege to be with her as she drew her last breath.

We don't blame Dad, it was an accident.

He has all sorts of causes from suicide to murder... I think the Police and Coroner being involved from the first day and using the term "killed in an apparent accident" may have planted the seed for his confusion on this... or maybe it's just denial.

I wanted to grieve for her, I loved her so, but it was apparent from that moment there was no time for that... the shock had sent Dad into a downward spiral that was literally horrific to watch. By day three he was shuffling, couldn't remember my sister or myself.

On the morning of day 5 post accident he was very unwell. He was admitted to hospital with severe sepsis here he remained for ten days being let out only for Mum's funeral. The shock and the infection have left him categorised as "High Care Dementia, Level 3/4" the highest in our system, eligible for admission to both Respite and Permanent Residential care.

How do we get him to go? We are looking at getting a Guardianship in place, but I really didn't want to resort to enforcing it... I want him to accept it is the best solution in a poor situation - at least best for most of the people involved.

He has been negative and spiteful virtually full time since we've been caring for him. My sister has stayed in town, her partner has stayed at their home 400 km away to tend their animals. Sis has moved into his home but I (still trying to run the family business, while dealing with Mum's Estate and setting up new "systems' for Dad's household) have to go every day to help or at least put out "spot fires".

Sis tried taking him down to her home with her (so she could spend some time with her partner and to give him a change of scenery, he sits and sobs all day at home, looking at Mum's photo on the wall). He liked the first trip, loathed the second... all the filters are off so he didn't mind and doesn't mind telling her how badly she does things, says she lives like a pig (my Mum was a fanatic in the house) can't come up with a nice thing to say about her.

I'd feel sorry for her, except I'm getting much the same; We have had him every weekend, last "weekend" was five days long to give Sis a break, he likes it at our place (I do things more like Mum did) but I can't get any of my work done when he's here, he is very demanding, needy... it is NOT tenable long term.

I am Dad's EPA so I am constantly being told I'm trying to steal everything he "worked all his life for - he's been retired for 32 years, so not ALL his life for a start.

Whenever we try and get him to put money in envelopes to cover groceries, household expenses (just putting a lump sum in the safe didn't' work, he created holy hell until he was carrying nearly two thousand dollars around in his wallet all day... then misplacing it or hiding it then accusing us of stealing it.

He owns a house that will more than cover the bond for a very good aged care facility, close to where I live so I can honour my commitment to go and see him most days, have him come stay for the odd weekend, come to family occasions; all he hits me with every time is "You're sending me to prison, I've been in institutions through my life (he was evacuated during WW2, and was in the army for two years).

He goes on constantly about how everybody has had it in for him all his life, though this is not new behaviour - he's had a chip on his shoulder all his life. He threatens suicide all the time, but we know it's empty threats, he wants to die, I don't blame him... his new world without his bride of 66 years is a lonely one.

The research and form filling I've done towards Respite and eventually Permanent Care, while working full time and sharing his day to day care is causing some real health issues for me;

I expected to feel stressed but my blood pressure (never been a problem) is dangerously high and even my blood sugar (normally "normal") is extremely high.

I'm not coping even though it looks like it from the outside.

The main thing I want to know, though I'm not sure anyone can answer it is how do I get my Father to at least have a conversation about the benefits to all of us of him being in Professional care.... and the one I really ask myself, how much of this awful petulant behaviour is down to his dementia and how much is just "Dad".

I fear I know the answer and it makes me so sad to think that my Mum, the sweetest of people, was putting up with this rude, arrogant, demanding prick of a man for years.

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BITTER MOTHER
by: JOHN

I have come to trust my mother all my life, but now I am very alone. My previous post should tell you about my mother. As I previously stated, I believe my 87 year old mother is either trying to mess with my brain, or she is depressed as I also stated.

As I said my mother is quite efficient with doing basically everything. But sometimes I swear, she is acting like the helpless mother to others, but when she deals with me, it is very quite different.

People looking in at us from the outside world, are just biding their time, to eventually see what's going to happen with her 2800 square foot home.

I believe to a point that she is either jealous of me, and is acting out, to me, and to other friends and relations. To this day I have never had say, growing up, even up to this day.

I want to tell people and relations that I still am smart, but even this my mother eats me up and spits me out, when it comes down to brass tacks. As I also said in an earlier post, I don't have any funds. to rent a motel, even for a little while.

I feel like I am a puppet, dancing top my mothers drum. I have to take my life day to day. I was an adopted child, and the only one of my mother and father had.

They over protected me my entire life, and now there must be somebody pulling my mother's strings so much that it's not her talking, but her mental state or someone else that wants me out of the picture. I know it have a lot to do with inheritance, and the people (family and friends) that knows that when she dies. they of course want a big piece of the pie.

I keep telling her that I don't want her money after she dies, then she always comes down with "that I am the only immediate family she has. What I am going through for the last several years, is a soap opera all the way. Anybody have any advice that a 49 year old man can take?

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Love
by: Anonymous

Good for you..... one step at a time. You are making great progress for a smooth transition. I was in a very bad place and it is lifting me up to read these posts and it is reminding me that I do not want to become bitter; I want to become better.

I need to turn it around - remember Faith, Hope, and Love - but the greatest of these is Love......

Next week I am going to a 2 day seminar on elderly, brain, and Dementia - I need a refresher course, it will do me good. God bless you and your family. I am sure this is a difficult time for you.

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Thanks for the perspective
by: Anonymous

Thanks for your comment; It's been hard not having Mum to bounce this stuff off, she was my "go to" person.

I DO know that finding a safe place is the answer... for us and him. He is starting to feel the tension around him, and he is reactive to it; things are calmer when he is at our place but it's a hiatus at best.

I'm sure when I'm not worried ALL the time about his well being that the dust will settle, he and I both like routine so we'll establish a new one.

I do acknowledge to him all the time that his life has been devastated, and how awful that coupled with the rapid progress of his dementia must feel for him; it's hard enough to observe it really MUST be hard for him to go through

In an interesting development, I was talking to Dad the other evening, repeating the same old reasons behind why he needs (and we need him to be in) permanent care, I've read that repeating the same basic information often is helpful, when I mentioned an Aunty (by marriage, no relation to Dad)

I told him he would get worse, as Aunty Gwen had; he looked me straight in the eye and told me he didn't realize that he had the same "brain problem" that she'd had.

The thing is he remembers when Gwen was put into care, her husband (my Mum's brother) was broken hearted at having to do it, but she kept wandering on main roads and he could no longer cope; my Dad... who can't remember what he had for breakfast... clearly remembered Gwen's condition and more importantly (from my point of view) the effect it had on her family, he nodded and said now I can see why things have been happening like they have, I never realized I had the same thing as her.... and it occurred to me that we had told him he has dementia but hadn't really framed it in a way he could relate to - now we have he has had more peace with it

Still a cantankerous old so and so at times, but better.

The appointment I was dreading with his GP, which Dad accompanied me to, so I could commence getting a Guardianship in place (I have an EPA signed happily when Dad was Compus Mentus) went smoother than I was expecting; Dad just agreed that he shouldn't sign anything, seeming to accept that he is compromised

Of course, he wrecked it all by that evening raving at my sister (and her partner who came up for the weekend to give my sister some relief, and only added to the angst by calling my Dad names and declaring the old fart won't remember anyway, helpful!)that he'd never signed anything to say I could sell anything of his, and that he'd rather burn it all than see any of us gain from it.... huh??

Talk about cutting your nose off to spite your face! I'd better hide his will, in which he describes us as his cherished daughters in case he uses it as the fire starter :-)

I feel better about getting the formal Guardianship, the GP was quite clear that Dad is not fit to make these decisions for himself and could see that we have his best interests at heart. It does help to feel vindicated

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You do not need an answer to those questions.....
by: Anonymous

Oh my!!! I was exhausted reading your post.... and I am so sorry for it all. Just when I thought I have read the most trying of posts - I read yours!

My thought is you will never have that
"conversation", and I do not believe you need to know where his dementia ends and he begins. The question is, "Can you handle him as he is in the here and now?" Because this is your reality as it stands.

We do not have all the answers and we never will; we are not doctors or nurses; nor are we insensitive; we are all caring and want the best for our loved ones - but we are all human as well.

For me it comes down to the fact that we have to keep our loved one safe; we need to protect them from themselves (whatever that may look like) - that is a challenge when they are so rebellious and abusive to us.

That is something that plays on our emotions; it is physically and mentally impossible to deal with. I will not go into it, but just know I have difficult challenges with my mother, but she is not at a stage where she can be put in a home, she would not qualify.

Your dad qualifies and it does not sound like you can keep him safe, nor are you prepared to take care of him, without you yourself deteriorating to a point of no return.

This illness is progressive and will escalate.

So, I would advise you to carry on and do what needs to be done to get him the care he needs. It is normal and human to feel guilt, because you are a caring person, but you are not equipped to handle this stage in your dad's life.

Your mother sounds like a sweet angel and I am sorry for her tragic accident and I am especially sorry for you and it is good that you are reaching out.

Once again, in order to make a decision, you do not need an answer to those questions, you need to access the situation as it stands today. Bless you.

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