Changes at Chez Gurp

[John van Gurp]

Things have sure changed at home for me and my sweetie. In case you
don't know, she is being ravaged by early onset dementia. It hit at age
60 and here we are almost hitting the three year mark. I have to help
her with everything. She's incapable of the requirements of everyday
living so I'm on duty from the minute her feet hot the floor in the
morning until she's asleep at night. It's been quite a ride, and there
are new challenges every week it seems. She also has aphasia and is no
longer speaking more than a word here and there. I tapped into various
support systems and services and I do get breaks during the week but
it's still a tremendous struggle. I'm not sure how much time she has
left but my guess is just a few years at best. The Fickle Finger of Fate
spun around and found her and issued a big F*CK YOU to her. It's a very
cruel disease process. Wow

--
Best regards,
John

[NSBooklady]

It's cruel indeed and I'm so sorry you're going through this. Glad you
have support systems and you're getting some respite from the
responsibilities. Caring for her 24/7 would be very draining so you need
me time. There's a lot of help available if you know how to access it
and it sounds like you have all that taken care of. Still stressful; and
draining but at least you don't feel alone in it.

[John van Gurp]

I am guessing that it gives me a bit of a better insight into your
circumstances, with the challenges of getting out etc.

--
Best regards,
John

[axemen99]

Try the Apple iPad to help...

https://aphasia.org/aphasia-resources/aphasia-apps/

I used different APPS with ALS.

[John van Gurp]

The dementia means there's no real therapy or even assistive technology
that will help. Besides the language centre deterioration there's a
steady loss of cognition. Her left cerebral hemisphere in particular has
measurable atrophy. I look at this more as palliative care at this
point. Trying to set up systems or trying to fix things is sadly futile.


--
Best regards,
John

[Donna Whitman]

It does which is why I stressed the importance of respite care. Been 5 years since I had help. Went years with some excellent people but …..

BTW, neither my message or your response came through Eternal September. Found both on Google Groups

[John van Gurp]

5 years Donna? Wow... that doesn't seem sustainable. My heart goes out
top you. Not sure what to say about the newsgroup, but if it's on Google
Groups shouldn't it also make it to eternal-september?

--
Best regards,
John

[axemen99]

On 2/20/2024 12:52 PM, John van Gurp wrote:
>> BTW, neither my message or your response came through Eternal
>> September. Found both on Google Groups
>
> 5 years Donna? Wow... that doesn't seem sustainable. My heart goes out
> top you. Not sure what to say about the newsgroup, but if it's on Google
> Groups shouldn't it also make it to eternal-september?
>
> --
> Best regards,
> John

I read all with eternal-september.

Thunderbird does not retrieve new messages automatically. With
Thunderbird, Right click the "alt.general", then click "get messages"

[axemen99]

best wishes on your journey.
Life is not easy to take care of your LOVED one.

A classmate, undergraduate at Acadia, lived on same dorm floor as me. I
liked him a lot, he stood behind me at graduation ceremony. He retired
as RCMP from BC. He was diagnosed to have ALS Jan 2022, then passed
away in April 2022 in Dartmouth.

[John van Gurp]

ALS - another cruel and horrific disease. I'm sorry about the loss of
your friend axemen99 :-(

--
Best regards,
John

[John van Gurp]

I feel extremely guilty sometimes thinking it would be better for my
DW's condition to not linger for an extended time.

--
Best regards,
John

[lucr...@florence.it]

On Tue, 20 Feb 2024 17:13:39 -0400, John van Gurp <jvan...@gmail.com>
wrote:

Don't feel guilty, back in better days she would have agreed with you.

[Gurpster]

We actually had an understanding that I was supposed to go first, and
that she was to push me off a cliff before things went too far south.

[axemen99]

On 2/20/2024 7:50 PM, Gurpster wrote:
>>> I feel extremely guilty sometimes thinking it would be better for my
>>> DW's condition to not linger for an extended time.
>>
>> Don't feel guilty, back in better days she would have agreed with you.
>
> We actually had an understanding that I was supposed to go first, and
> that she was to push me off a cliff before things went too far south.

It seems that you have made the right decision:

Center for Living, giving ALS patients their independence back
https://www.youtube.com/watch?v=CX2NyUGy4Bs
Differences between Hospice Care vs Palliative Care
https://www.youtube.com/watch?v=hM47CUeDtmE

[NSBooklady]

On 2/20/2024 1:52 PM, John van Gurp wrote:

>>>> It's cruel indeed and I'm so sorry you're going through this. Glad you
>>>> have support systems and you're getting some respite from the
>>>> responsibilities. Caring for her 24/7 would be very draining so you
>>>> need
>>>> me time.  There's a lot of help available if you know how to access it
>>>> and it sounds like you have all that taken care of. Still stressful;
>>>> and
>>>> draining but at least you don't feel alone in it.
>>>>
>>> I am guessing that it gives me a bit of a better insight into your
>>> circumstances, with the challenges of getting out etc.
>>>
>>> --
>>> Best regards,
>>> John
>>
>> It does which is why I stressed the importance of respite care. Been
>> 5 years since I had help. Went years with some excellent people but …..
>>
>> BTW, neither my message or your response came through Eternal
>> September. Found both on Google Groups
>
> 5 years Donna? Wow... that doesn't seem sustainable. My heart goes out
> top you. Not sure what to say about the newsgroup, but if it's on Google
> Groups shouldn't it also make it to eternal-september?
>

There are times when I feel burnt out but the option of placing him in a
home is NOT one I want to consider so I motor on. We have strength
within us when protecting loved ones that we don't realize we have.

I think the issue with Eternal September may have more to do with my
receiving messages than them having them on their server. Since I have a
GMail address, things off Google Groups are always received immediately

[NSBooklady]

Did figure that out but for now (until tomorrow), I'm still popping in
on Google Groups to make sure I'm getting everything,

[NSBooklady]

On 2/20/2024 5:13 PM, John van Gurp wrote:

Life is not easy to take care of your LOVED one.
>>>
>>> A classmate, undergraduate at Acadia, lived on same dorm floor as me.
>>> I liked him a lot, he stood behind me at graduation ceremony.  He
>>> retired as RCMP from BC.  He was diagnosed to have ALS Jan 2022, then
>>> passed away in April 2022 in Dartmouth.
>>>
>>
>> ALS - another cruel and horrific disease. I'm sorry about the loss of
>> your friend axemen99 :-(
>>
>
> I feel extremely guilty sometimes thinking it would be better for my
> DW's condition to not linger for an extended time.
>

Don't feel guilty. No one wants to see a loved one suffer and you can
never be sure how or if someone with dementia understands what's
happening to them. My mom became child like and seemed content enough
if dealt with at HER level. It freaked my sister out but probably
because of Kevin, I was able to adapt.