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Terminally ill parent/s and dementia


MiaB
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I'm just reaching out to see if anyone else here is dealing or has dealt with a terminally ill parent or one who has dementia.  My father falls into both these categories. To date this has been a year straight from hell, which has involved grieving the loss of him before he has actually passed, because there is now a different person living in his body.  I wouldn't wish this on anyone, but if you have been through anything similar, I'd be grateful if you could share.  How did you take care of your own mental health whilst experiencing this?

Mia

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3 hours ago, MiaB said:

 I wouldn't wish this on anyone, but if you have been through anything similar, I'd be grateful if you could share.  How did you take care of your own mental health whilst experiencing this?

Mia

Mia, I am so sorry you are going through this....It is tough.

I had a much similiar experience with my own mother, who passed away in 2015.....I was very close to her, and so was my daughter...Daughter was 15-16 at the time.

Towards the latter part of 2014, my daughter told me that her grandmother was forgetting how to drive to familiar places, like my house, the grocery store, and she was missing turns, etc......When i would go to mom's house, I noticed that she was hiding her silverware in her bedroom drawers, hiding candy in her attic, and other similiar strange things.......Some of her friends noticed some strange behavior, too.

I had a talk with mom, and I suggested that she might want to go to the doctor to get checked.....She refused, and didn't want to go......By this time, I had told my sister, who lives in another state....We finally persuaded her to go to ER, where she had imaging done on her brain.....Turned out that she had 2 malignant brain tumors......One of the tumors was pressing on the frontal lobes of the brain, and one was deep down in the lower part of the brain, where they could not operate.

The tumor that was pressing on the frontal lobes was the one causing all the strange behaviors, so the decision was made by brain surgeons to remove it......We were warned by doctors that it would probably grow back, because the type of cancer she has was very aggressive......She had the surgery to remove it around Christmas 2014......She came through the surgery, and felt better, for a little while.

We were also told by doctors that chemo was not very effective for this type cancer, so she went and got a series of radiation treatments....Doctors told us that her life expectancy could be anywhere from 6 months to a year....She had round-the-clock hospice care in her home, because her wishes had always been that she didn't want to die in a hospital.....During her last 6 months (she passed in June 2015), many friends and of course my daughter and I were frequent visitors...My sister, who lived further away, probably visited once a week.

Doctors made a point to us that her cancer was not painful, so at least there was that.....I had to watch my mother deteriorate over a period of 6 months, until she was basically in a coma....It was so painful for all our family to watch.....I cried a lot during that time, just cried so much.....My therapist said that the crying was a normal grief response, and also told me it was okay to cry anytime I wanted......My mother was 80 yrs old when she passed.

She went to sleep one night, and never woke up, her passing was painless and peaceful......But it still hurt me so much.....My mom was so healthy and vibrant before this cancer got her......She never smoked or drank, ate a very healthy diet, was very social, and exercised regularly....She was just a very outgoing wonderful lady, and cancer took that all away.....I was so angry about it....She did everything to take care of herself, and this still happened??.....Our whole family and all mom's many friends were devastated.

During this terrible time of great grief, I took care of my mental health with the help of my wonderful therapist....I also kept in close contact with my pdoc....I was not afraid to cry--if the urge to cry came over me, I'd cry as much as I wanted......The anger I felt about her passing, and the grief, took a long time to go away.........I still feel some sadness about it, 7 yrs later, but not nearly as intense as it once was.

I'm sending positive thoughts your way---don't be afraid to cry...

P.S.--my apologies for this being so long a post

 

Edited by CrazyRedhead
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Yes, my father had dementia. It's an awful thing to witness and you do end up grieving the loss of them while they're still alive. Also possibly wishing that they were already dead. I don't know how far along your father is but that is a common thought. Can lead to a sense of guilt, but having seen what it does I'd rather be dead than go through that, and put other people through that. Nothing to feel guilty about. It's kindness. So sorry that you're going through this too. I was never close to my father, and I wish I had been. Must be worse to see someone you love declining like that. I guess that was what upset me the most. Never being close to my father and knowing that it's too late to change that. Try to remember the good times. It's upsetting to see someone decline like that. They look the same but it doesn't seem like they're really there. My mental health did decline and I ended up getting help, which was long overdue anyway. Not completely to do with my father. It's a really tough thing to experience and I feel for you Mia.

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Not sure if this is helpful at all, but my grandma's geriatric internist (not sure how to word it but she's a primary care doctor who has a specialty in geriatrics) recommended this book to my mom and her two brothers (The 36-hour Day):

https://www.amazon.com/dp/1421422239/

We have it at home and I have yet to read it myself. My grandma (now just a few months shy of age 99) starting losing her short term memory probably beginning in her late 80s/early 90s. She lives with one of my uncles but he's a bit oblivious and the issue didn't come into sharp focus until my grandma received some massive IRS bills for not paying taxes on bonds she was cashing in (normally she handled her own bank account and taxes up until then--my mom has since taken over). For the past few years she has had pretty much zero short term memory. There is a caregiver that comes to the home to help out with her showering, getting dressed and basic house tidying (currently at 4 days per week) and my uncle still lives with her at her house. My mom and I visit about once a month, sometimes more around the holidays. She's about an hour away.

When I say zero short term memory, I mean zero. She will eat something and then I'll ask what she ate and she doesn't know. Basically she lives moment to moment I guess. It can be difficult to get her out of "ruts" in conversations at times because she will repeatedly ask the same questions and we give the same answers, over and over. Or she'll repeat what she has to say over and over because she doesn't realize she's just said it 30 seconds ago. The good news is some of her longer term memory is intact and we can talk about the past. And I can tell her something and then my mom will come in and tell her the same stuff and it's all brand new to her since she's forgotten already what I've told her (about upcoming trip plans or whatever).

Her personality luckily has remained pretty much the same--she is kind and fairly docile, though stubborn about certain things (that was always the case). All the caregivers like her and she likes to please them so goes along with most things. But it is a different relationship that I have with her now because of her having no short term memory or concept of time/date/season/what's going on. I don't know how to describe it except that's it's almost like she's reversing back in time to being almost like a baby or small child in some respects. She still enjoys when we come to visit and have dinner and talk with her (in the moment). But I know she won't remember that we were there for the most part unless my uncle reminds her. Every once in awhile she'll surprise me and ask a question about something we've talked about recently...but that's pretty rare. One time my mom was staying there while my uncle was in the hospital and grandma wanted something to do to be useful so my mom gave her a basket of freshly laundered socks to pair up thinking it would be simple enough and would occupy her. Well, my mom quickly learned that my grandma's mind strays too much so that she can't complete even a simple task like that--so no socks got paired up. She has to be prompted to drink and eat and cannot get water or food for herself from the faucet or fridge, except maybe if you leave a bowl of nuts next to her she will eat from them.

We usually try to bring flowers (or treats) when we come so that she'll know afterwards that we visited. I knit her a lapghan recently (in purples, her favorite) so that she would have a reminder that I am knitting and thinking of her even when I'm not there. My uncle picked out a thank you card for her and she even wrote me a little message inside--it was several sentences long so much more than the brief notes I now get in birthday and holiday cards that my mom picks out for her and prompts her to sign (my grandma still insists on doing cards--it's not my mom forcing her to do them). I will probably save this recent thank you card from her because I haven't seen my grandma express a thought that long in writing in a long time whereas she used to write me little letters in college about her vegetable garden, etc. My uncle of course had to prompt her to give me the thank you card when I was there, but I'm guessing it was her that initially thought of getting the card in the first place (she's more into that sort of thing than uncle).

I'm sad that my sister no longer makes an effort to see my grandma or engage much. I know it's difficult to engage now but my grandma was the best grandma ever and I have wonderful childhood memories with her as we used to go to grandma & grandpa's house for Thanksgiving, Father's Day, etc. and my sister and I would spend 2 weeks there most summers until we got older (teenage) and were busy with friends and school activities. When we were young, grandma bathed us and put us to bed every night and she made whatever we wanted for breakfast, even if each of us wanted something different. We also got presents on each other's birthdays because she didn't want the other sister to feel "left out" on the other one's day.

Anyways, I feel like even though my grandma & I's connection is different now (she's a bit different, and we're not always able to fully connect--mainly due to the lack of short term memory), I can at the very least enjoy her company in the present moment and do my best to make her as happy/comfortable as she once made me when I was younger. She likes having us come visit and spend time with her, even though she doesn't hear or remember much (refuses to get hearing aids btw). I guess just our presence helps her be more happy in the moment. So I try to focus on that. She still has a happy disposition in general and I don't know how I'd cope if there had been a major personality change.

I talk to my mom about it (my grandma's short term memory loss) from time to time and that helps since we can both talk/relate about the difficulties of it and also talk about the happy moments we're still able to enjoy with grandma (I'm really hoping the same thing doesn't happen to my mom someday regarding the loss of short term memory).

She will likely have to move into a Memory Care (nursing home type) facility in the future but she really wants to stay at home and for now it's working ok. Not great, but ok. We toured potential facilities this year and even took her to see one of them. That aspect of things is a whole next level of upsetting that I don't want to get into right now.

This may be different from dementia but I thought I'd share my experience and mention the book in case it helps.

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I'm sorry you're enduring this, Mia.

I have no recent experience, but I have lasting memories of my paternal grandmother, who we lost to Alzheimer's when I was a teen in the 80s. I have strong memories of Mamaw when she knew me and her mind was sound, and memories as she faded, and an indelible memory of the day she thought I was my father at my age and she never knew that I existed again. I live in the house she and my grandfather shared. The door to her room had a panel taken out of it so she could be observed. The panel was never replaced. A curtain hangs over it now.

But at the side of the house is a wildflower garden, which I barely tend (a good thing too, as my gardening thumb is black as coal) and the wildflowers she planted when she was well still endure, and flourish, every spring. We never know how an individual's presence on Earth will echo in his or her passing, but no one leaves in silence.

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Thank you to all of you, very much, for taking the time to respond.  Forgive the long response in return.

We have been dealing with a double whammy of vascular dementia, which was caused by TIAs ("small strokes") he had between two heart surgeries in December, and acute delirium caused by severe thyroid/parathyroid disease.  We first started noticing that something was "off" towards the beginning of the year, when he began losing track of time and space - days blurred into one another, he didn't recognise where he was living, was perpetually confused, and so on. 

It went downhill very, very fast because of the thyroid and parathyroid issues - I now know more about these glands than I ever imagined I would need to know.  Excessive calcium deposits on one of his parathyroid glands led to an almost continuous psychotic state.  I obviously know about psychosis because I have experienced it as part of my own condition, but until this year I had never been so directly on the opposite end of it.  To say it has been horrific is an understatement.  At its worst my sister and I risked losing our jobs because we were having to drop things and run at a moment's notice.  

There are multiple events I could recount.  Some I have found personally very damaging.  I was going to describe them here, but have deleted that part because it doesn't seem appropriate.

In late July he was hospitalised because he fell and broke 4 ribs.  He wound up in orthopaedic high care for 5 days while they drained litres of fluid off his lungs, and then he was kept in hospital for another 15 days.  His condition was so serious by this point that they brought forward surgery to remove the thyroid and offending parathyroid, despite warning us that it was very possible that he would not survive it.  They let us sit with him before he was taken into the theatre, and I said goodbye thinking I'd never see him again. He did survive however,  and was eventually sent home, but we have been told not to expect him to live to the end of the year.

At the moment we are getting snatches of clarity out of him, and he is much, much calmer (no more middle of the winter night rescue missions for my sister and her wife), but he will never be what he was. Possibly the saddest part of all of this is that his brain was his career (he was a university academic and researcher), and the fact that it is that is failing him in his final days is just cruel.  I am in the same field and I don't think realised how much I relied upon him to be my go-to person for advice until he wasn't there anymore, and that is a big thing for me to come to terms with.

I have been having appointments with my pdoc every 2 weeks, so I am being monitored in terms of medication and very short bursts of therapy (the appointments are 30 mins long), but work is very demanding at the moment, particularly because I have a brand new manager.  I am not sure what is going to happen there, because I have not even had the chance to tell her about my mental health status or what is happening in my family.  Since she started I have been working 10-11 hour days, but that is not sustainable, and if when my father dies, I am going to need a whole lot of understanding from her.  I am all out of my allowance of family responsibility leave, so any other time out I take will have to come from my annual or sick leave allowance.

@CrazyRedhead I cry everyday.  I fought it for quite a while until someone told me I would probably crack completely if I didn't.  I am so sorry to hear about your experience with the loss of your mother.

@Fluent In Silence Your understanding is spot on.  Yes, he looks the same, but the person he was is gone.

@aquarian Thank you for your thoughtful response.  Alzheimer's presents a little differently to vascular dementia, but the loss is no less.  My aunt has it and I am experiencing it through my cousin.  Here we call that type of doctor a geriatrician - a specialist physician with a subspeciality in geriatrics.  My father has one on the team of those treating him.

@Cerberus Perfect words as always, thank you.

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