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Mom just diagnosed and dad showing signs of dementia - How do I help them 
Started by Chez J
27 Jan 2021, 2:52 AM

Hi there,
My mom was diagnosed with terminal pancreatic cancer in October.  We have watched my dad (legally deaf) deteriorate cognitively for about a year now.  Since my mom's diagnosis, my father has deteriorated much faster and he still believes she will get better - he cannot accept the diagnosis yet.  I should preface that until early in 2020, my parents were doing well - they are currently 85 and 87 years old. 
My mom is at home and my father believes he is doing everything he can to help my mom, but he has fallen into patterns that is affecting and stressing my mom to a point where she cannot sleep anymore.  At most times now his actions are no longer rational (blaming my mom for missing pillows, having a boyfriend, not letting her sleep, repeating himself over and over again, loosing money and papers in the house) and then other times he is quite lucid.
My mom thought she could handle him but this is no longer working.  We have suggested cognitive testing for him (finally got this scheduled for Feb sometime), getting counselling, taking her away for a few days to detox from the stressful environment - all to being denied her wanting to do anything (she believes she still knows best).  She calls me in the middle of the night crying because my dad won't let her sleep or leave her wander around the house because she can't sleep - it's a real XXXX show.  My mom always believes she knows best of everything, but she is no longer making rational decisions and this is excellerating her illness and fragility.  She hasn't wanted to tell her palliative Dr. about what is going on, but I have put my foot down and this week we will be telling her palliative doctor what has been going on. 
My question is, as her power of care and the only person she really talks to about how she feels and the disruption at home and the burden is overwhelming for me.  COVID aside, I have a family as well who I look after, my parents live 50 km away from me, I lost my job due to COVID and am financially in trouble now too.  How can I help her or guide her or do I start making better decisions for her ?  I don't know what to do anymore.  Both are expecting me to fix things but I don't have any idea what to do.  Please help.
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Reply by Lucky1312
27 Jan 2021, 2:46 PM

Hi, Chez -

You are right to be really concerned.  Though your dad is elderly, one stage of Alzheimer's or dementia is violence, and your mom is not able to defend herself.

My mom is thankfully healthy, but Dad was diagnosed with Alzheimer's.  He had some physical issues, as well, which necessitated us getting care givers in to help Mom.  I see you are financially in trouble ... do your parents have money put aside?  This is the time for them to use it.  We had care for Dad for 10 hours per day.  The most reasonable rate we got was $22 per hour, and the most expensive was $31 per hour.  I don't know where you are, but we used a company called Senior Care by Angels in Milton, ON which was the most reasonable rate.  I would highly recommend them.  Comfort Keepers is the expensive option.  

It sounds like you are at the point where you must have someone there to care for your dad.  If you have siblings or other relatives willing to pitch in and take shifts, that's great, but you need 'round the clock care because Mom needs to sleep.  She is terminal, and pancreatic cancer works quickly from my understanding, so you will soon be dealing with Dad alone, and things are bound to get worse.

I lost my dad on November 29th.  The void is great, but my mom has some peace.  We cared for him at home for five months and it cost $50,000.  I would advise everyone to use their very last dime caring for a loved one at home as opposed to being in a hospital or, God forbid right now, a long term care home.  Dad was in hospital for five weeks before coming home to be cared for by us and he lost everything he had in hospital:  his mobility, his cognitivity ... everything.  We kept him very comfortable for those last five months of his life.  Expensive?  Yes.  Worth it?  Absolutely.

I would love to answer any questions, and email or phone are best, so perhaps the admin will consider giving you my email address.  I can't give it here because it is against group policy.  I know this is a very rough road, Chez.  I work full-time at home, and though I am thankful to have a job during Covid, it suffered terribly while I took care of Dad and I am now racing to catch up.  You have your own family ... would you consider going to stay with your parents for a few days to get a handle on what things are really like in their home?  

Don't wait.  You have to act quickly before a disaster happens.  Please keep in touch with us here as I am not the only one who will respond to you.

xoxo
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Reply by eKIM
27 Jan 2021, 4:10 PM

Dear Chez

I cannot add to what Lucky1312 said because I have not direct experience with Alzheimer's in my family.

But other than direct information, I can say that you have found a warm and caring place to tell your story.  And sometimes, just having someone to listen to you can be a comfort.  So we are here for you.

What type of support do you have from friends, family, social agencies etc.? 

What are you doing with regards to self-care so that you don't succumb to caregiver burnout?

What is your greatest source of comfort in these difficult times?

I send you thoughts of love and peace.

eKim
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Reply by Chez J
28 Jan 2021, 10:56 PM

Thank you for your lovely words and virtual hug.
The nurses have been great for my mom, but I think it's a need I have to focus on my dad's wellbeing too - I think he feels lost andwe struggle how to help him too.
Support - well I have a great family - husband, children (grown) who are there for me.  I do have to learn to not react or be pulled into things that are harmful for me.
I will keep reading and watching posts as well.Thanks

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Reply by Chez J
28 Jan 2021, 11:01 PM

We also do not have a diagnosis on my dad yet but violence - that has not surfaced at all - he's just seems frustrated and he knows something is going on with his mind too.  So sad to watch and I do not want either of them in hospital - they will stay home for sure.
Thanks
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Reply by eKIM
29 Jan 2021, 12:35 AM

We have two daughters and I know they would be as kind and loving as you are to your Mom and Dad.  

I am so proud of you and I don't even know you.  LOL  Well, what can I say, I just am.

You must have been raised with a lot of love because it shows.

"Love, when we receive it, is not ours to keep.  It is ours to give away."

It seems that you live this moto.

Keep posting as long as you need us.

Love and peace and a VirtualHug.

eKim

ps Do you go by Chez?  Otherwise, if you have a nickname or something you'd like to share, please do so.

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Reply by Chez J
29 Jan 2021, 3:51 AM

You've brought tears to my eyes, by the way, my name is Jannett, chezj is my culinary handle, lol.
today I got her some quiet time a took her alone to our cottage. Fireplace on, candles lit, quiet classical music on and she fell asleep . First time since her diagnosis without pills, just sleep.
i wish I could share the picture of her resting.
 Thanks for your prayers and support
jannett 
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Reply by eKIM
29 Jan 2021, 3:30 PM

Hi Jannett

I can picture your Mom fast asleep.  Keep that memory always in your mind.  It will come in handy in the future.

And the tears you speak of: I hope those were "poignant tears" Jannett.  I have a feeling that they were, were they?

Poignant tears are simply "happy" tears in disguise.  They are "healing" tears.  Here's what I mean:

My Mom passed away years ago.  She is the only one who loves me in an unlimited and unconditional way.  I use the present tense because she does still exist but as a non-physical entity. 

No one else has to believe this - I am not proselytizing.  But it is what I believe.

So therefore one of the ways that I accept my mortality is that I am excited about reuniting with her someday.

But I digress.  Back to the "happy, healing" tears.

When my Mom first passed away, of course, all my tears were sad tears.  They would come whenever I thought of her.

Over time three things happened:

    • the duration between bouts of sadness became longer
    • and then one day - glorious day - I thought of her and "happy" tears came to my eyes when I remembered a precious time spent together and a funny story that she told me about when I was a toddler.
    • I found, at last, peace in my heart.

Jannett, I send you warm VirtualHugs, love, and hope for the future when peace will fill your heart.

- eKim

ps  I have found that journaling (in private or like you are doing now) to be one of the very best stress-relief coping mechanisms that I have found.  I use it all the time.  For me, it is always therapeutic and at times even cathartic.


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Reply by TrevorL
30 Jan 2021, 5:22 PM

Hello Jannett,


Thank you for sharing your experience and thank you to everyone for replying. Though I have not experienced a loved one with Alzheimer’s, in the past weeks my father has become delirious and difficult to communicate with. I can appreciate how wrenching the experience can be to see those familiar personalities change. I am wondering how the experience has been for you? I understand you have an immediate family to attend to along with your finances and can imagine you are juggling many responsibilities and challenges.


I don’t have any blanket advice as I imagine that our relationships with our parents are unique and seeing these changes effects us all differently. I am glad that you were able to make a comfortable space and setting for your mother to rest. I hope that you receive the same warmth and acceptance in your own life - both in the Virtual Hospice network and beyond.

I wish you all the best in the coming days and weeks of 2021.

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