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I fought 27 below when furnace went out and won
alz+
Posted: Friday, February 1, 2019 8:59 AM
Joined: 9/12/2013
Posts: 3549


the artic blast whipped up snow in winds and it lodged around an air vent to furnace.

I didn't know this but the furnace was trying to restart for days until the ignition switch burned out. I texted my son and daughter and they told me to abandon ship, I refused and a repair guy came and replaced switch and it ran so he left and I thought it was fixed. But the problem was a pipe outside. I knew where the vent was but my neighbor had been called to "help me" and came over and tried to take the mission away from me. 

Definitely a moment of the ALZ defiance thing took over and I marched through waist deep snow using a ski pole, in stiff wind, 20 below zero. The neighbor kept trying to take the pole from me, NO! I use it for stability! although meaning well she had no idea about gas furnace venting. I found two clogged vents, tried to free them and stuff.

the impressive thing to me is I defied neighbor and my children and texted Outlaw Keeper for HELP. He came over and tried to free up outside vents but furnace kept shutting off. So we had same company send 2 guys 4 times and eventually got vent cleared and after 36 hours the had a new switch and installed it with clear vents! With very little sleep, we celebrated success. We worked as a team with oven and electric fireplace and 1 small heater I put in downstairs bedroom. 

Working together in deadly cold we had fun. We had a purpose, a battle. I depended on his courage and faith in being able to stay it thru. Everyone telling me to get to motel etc etc etc but, kind of like when I walk my body does not want to turn around and go backwards, I was going to battle and never gave up.

 It was transformative - aside from it working out and not one burst pipe or anything wrecked by super cold - it healed our relationship. We achieved victory in distress, and as a favor to me, what we could not do when married.

We founded a lifelong friendship over a broken marriage.

Hospice nurse on her way over for me to sign I QUIT papers. Will be moved to Northern California in March.

The visit with my adult children was super healing, want to tell about it later. I am still me, still have SISU (Finnish never give up spirit), and did it all with Alzheimer's in middle of artic blast. 

***

I had been puttering cleaning in basement last month and found this little electric heater which I had never used or remember buying. I placed on basement steps to bring up to give away pile, but thanks to dementia I never picked it up and moved it. 

That little heater gave us the bedroom as operation point. It was warm in there when 40 below wind chill outside. If I had given it away as intended we would have had to leave the house.

On top of this, the feral cat I feed SURVIVED and came for breakfast today!

Can you believe it! For once leaving water running helped, ha! 

love and courage


Iris L.
Posted: Saturday, February 2, 2019 12:37 AM
Joined: 12/15/2011
Posts: 16200


Your Dementia Pioneer spirit took over! Yea! Keep the faith, Alz+!

Iris


eaglemom
Posted: Saturday, February 2, 2019 2:52 PM
Joined: 3/7/2012
Posts: 2378


This posting put such a huge smile on my face. Congratulations on your accomplishment - that air had to be absolutely brutal to be out in. 

Very proud of how you were able to handle this. Big hugs from TX.

eagle


jfkoc
Posted: Saturday, February 2, 2019 4:36 PM
Joined: 12/4/2011
Posts: 17569


Bravo for many things. Not panicking, remembering the heater, remembering what could be the problem, remembering how to fix the remembered problem, working well with others. working as a team with Keeper. 

Are you quiting Hospice or is Hospice quiting you?

Do you have a generator?  Do you have a carbonmonoxide alarm?????

You weathered a memorable storm again, Bravo. You are one tough cookie. I would have been at the motel...lol


alz+
Posted: Sunday, February 3, 2019 9:18 PM
Joined: 9/12/2013
Posts: 3549


JFKOC - the hospice nurse was giving me bad advice and pushing me to not to see Keeper at all because he would "weasel his way back into my house" etc which was absurd.

She wasn't going to come fight the artic blast or really DO anything to help me. She pushed me into living alone and minimized my difficulties. When she called to stop by she brought papers for "to sign" to quit services and covered the reasons for  ending services section with her hand.

"Just sign it" she said. I took the paper from her and read the choices for why I was ending services. while trying to read them she was asking me weird stuff, was Keeper living here again? I told her I am moving. So he'll take your house? No it's for sale. and so on.  I told her, I don't really see the reason I am quitting in this list and she took the paper from me and did her elaborate thing to avoid my dog touching her, packed up and left.

Her visits were always nerve wracking to me I think, trying to intervene in people's marriages is always risky. I'm getting divorced what more does she want? She wanted me to hate and fear Keeper, and I might be wrong but I choose to make this more a beginning of friendship with him for end of life.

Hospice is all independent groups and not like when I worked for one in Florida.  

Keeper is bringing me groceries tomorrow and making blueberry pancakes. 

so shoot me!     Ha!


Iris L.
Posted: Sunday, February 3, 2019 10:32 PM
Joined: 12/15/2011
Posts: 16200


Two days before Christmas one year, my social worker sent me an article stating that believing in God was the same as having psychotic delusions.  I immediately sent her a note not to return, because I am a devout follower of Christ!  I don't like it when those people try to foist their beliefs on people they are supposed to be helping.

Iris


jfkoc
Posted: Tuesday, February 5, 2019 9:24 AM
Joined: 12/4/2011
Posts: 17569


What a nosey Nellie that Hospice worker is. I wonder if her employers are aware of how intrusive she is.

Blueberry pancakes. Sorry I was not close by...


Andy61
Posted: Tuesday, February 5, 2019 2:07 PM
Joined: 12/17/2018
Posts: 68


Alz - I dont know how you do it, but your posting about your life is inspiring to me. Years ago, folks would’ve written you off, but you are proving life can still exist after DX, even a happy one. There are definitely challenges for you but you seem to be strong, real strong, and conquer them all.

Im still DX with amnestic MCI, and whenever I have a bad day, I think of you, living alone, and I quickly realize I dont have truly bad days.

God bless you.


alz+
Posted: Wednesday, February 6, 2019 10:44 AM
Joined: 9/12/2013
Posts: 3549


Andy! -

what a nice surprise to read your kind words. Wish I could remember them to respond. Ha!

I do manage to have significant fun everyday possible. I feed birds which means getting bird seed supplied and getting through snow to the feeder. My dog will often run back and forth for me to make a trail but 3 times a day I figure out how to do it. Once I get the black sunflower seeds into the feeder and on the snow covered deck I call "Hey birdies, Hey birdies!" and stand for a moment as they sail in from the trees.

Feeding a feral cat is another project twice a day. Feeding me and my dog is 3+ times a day. Getting dog out 2 - 3 times a night is really hard but once she tells  me "I have to go!" I try to focus on helping her and then being able to get another 4 hours of sleep if lucky.

I developed tricks to my dementia like when I lose things, which is worse at times than others, I sit down, relax, and then look for something else. This way my brain is not deleting the image of what I actually want and it appears where I had looked before!

If a person has comfortable environment - not necessarily plush but that suits our better nature - life with dementia is not that bad. Our fear of a horrible end stage ruins a lot of the day for a lot of cognizant people, they are living out what they dread way ahead of time. Because I took care of my dad and enjoyed it I see it as becoming more introspective and I know from other personal experiences with people in end stages that silence does not mean zero memory or absent mind but more to do with ability to speak and even that comes back for many in last days of life.

I just don't believe the common story, at least not if a person has a comfortable way to live with the disease.

Just this week I realized what I have been fighting for thru this and why I took the chances I did and it is because I am determined to live fully for any amount of time before I die, defeating the abusers who trampled my life since very young age. To become myself and be free of rage, ptsd memories, giving up too much for too little.

Being alone lets me have hours and hours to sort through my past, to cultivate love, to learn how to be loved and stand up for myself. Aim for fun every day and if I need to stay in bed all day except to walk dog, feed birds and cat, then I make myself comfortable and watch all the old movies I want or read stuff online or listen to audiobooks on youtube.

'Illegitimi Non Carborundum' 



alz+
Posted: Wednesday, February 6, 2019 10:51 AM
Joined: 9/12/2013
Posts: 3549


Jfk OC

I had a sick feeling after hospice nurse left with those end of service papers so I called hospice office and asked if they would send me summary of my services and a copy of that last paper I signed.

They said they would.

I thought it was some help just to have someone stop in twice a month in case I was dead to find the dog. The second time she said to me, "I didn't ask to come see YOU, YOU asked ME to come," I knew I could go off on her and had to be very calm, my brakes are worn thin and I did not want police called on me or whatever.

When I get the papers I will see if and how she filled them out because I think they were questions for the patient but I could be wrong. She could have been trying to make it easy, less distracting, to have me just see where to sign my name.

I have no malice towards her but do think they need fresh training in dementia care.

***

I upped cbd dose again, 4 times a day, triple dose AT NIGHT with more thc, has helped me be more functional when I wake up. Was having days of forgetting to take in morning and not being able to get out of bed.

love and courage


alz+
Posted: Wednesday, February 6, 2019 11:12 AM
Joined: 9/12/2013
Posts: 3549


Andy and everyone -

When I was first diagnosed it was hell. Iris mentored me daily for years and during that time I went from suicidal and non functional to regaining some function and calmness.

Besides the love and encouragement I found on these boards, I learned from other people's stories, success and failure.

Also when I was searching for help online I found a random story of a woman who had a cannabis farm of some sort who rescued her mother who had dementia, Alzheimer's.

The mother was bedridden, contracted and on 6+ medications. She hardly spoke but over a few months she was up and helping in the gardens, talking, eating, laughing and got off the other medications. The caretaking daughter shared a few photos and one was of her mom laughing with a birthday cake in front of her. The caption said, "Yes we had a second cake because we knew she would forget the first one."

That was what I wanted. I wanted a place to live out my life around people I trust and love and enjoy and would live alone before I lived in a tense miserable situation. I started cbd oil and have declined in the disease but mentally and spiritually I am more alive, more myself, more content than ever before.

The start was being able to imagine this end of life being an achievement of reclaiming my right to life and to cut off all people who have ill intent or disrupt my fragile peace.

Imagine circumstances you love, that have few demands, a way to do as much as you can as much as you want and maybe some obligations (like my feeding birds etc).

Another thing I found is shutting off all noise around me for hours, walking in silence through iced woods, singing, getting on floor with my dog and smelling her fur and feeling her heat - there is nothing else more important.

when my adult children came to visit I smiled into their eyes, I thanked them for all they did, I showed them this illness is not so bad - in fact I told them that over and over and it opened their hearts and made them much more comfortable.

we still can try to be responsible for welcoming people into our lives, a smile, open arms, doing a small thing in gratitude enlarges our world. I don't believe we are as helpless as we often feel. Sometimes I am that helpless but I don't claim it as a lasting state.

Going to get dressed and walk fido now.

love and courage



Iris L.
Posted: Wednesday, February 6, 2019 6:05 PM
Joined: 12/15/2011
Posts: 16200


A

Alz+, I couldn't agree with you more!  We don't have to be miserable!  But we must get rid of people who want to make us miserable due to their own insecurities.  Please keep posting!  I value your wisdom!

 

Iris


Jo C.
Posted: Thursday, February 7, 2019 8:15 AM
Joined: 12/9/2011
Posts: 10231


Hi alz+; you are in a very good place and your sharing brings your very helpful insightful wisdom to all of us.  Thank you.

I am also pleased for you in that Mr. Keeper has become a friend, that is truly a wonderful turn of events.

Still pretty cold "up there," in the beautiful UP, I see.  We have been in the 60's in California with some rain, but by the time you make the trip out here, it will be warmer and returning to the 70's.    When growing up in the UP; (Marquette County), I remember walking to school on my birthday in late May and still having snow on the ground in the shade. 

 Please do keep in touch, you are very important to all of us and we look forward to your writing.

 Soft hugs and lots of warm thoughts once again being sent your way,

 J.


alz+
Posted: Friday, February 8, 2019 5:59 AM
Joined: 9/12/2013
Posts: 3549


the task of the day was 4am dog had to go out so out of dead sleep up and hitch her to tether, open the door into a stiff wind and snow drift - and the front door will not close.

-2 degrees. so 15 minutes with hot water a hammer and bare hands I got ice out of lock and dog came back happy and door is closed.

*****

Got text that work has started on fixing some things at california house, wondering if I can wait until May or June.

Panic. what happens when you put on a good performance to make those around you feel comfortable ( ) is they think you CAN handle it. That was last night, before the door.

I can still force some things to keep myself going. But all the bravery and stuff leaves me exhausted, and you know the ALZ already exhausted sluggish feeling to begin with.

Being alone stirs up chemicals for survival esp in this weather so I am running on fumes. This lethargy is not usually understood by people unfamiliar with ALZ.

as frustrating as that is, I had imagined making some things in the house suit ME better in a way I loved. It is a 2 bedroom 1 bath house. There were some changes I would have liked to make kitchen easier for me etc and that is not any part of what is apparently already happening. The house had wood heat and that is being taken out.

I had picked out doors on last visit for house, Old Man (forgot my nickname for him) really liked my ideas. when we were married and had nothing I made a home out of thrift store and flea market stuff. Color and function mean a lot to me and it was something I looked forward to doing. Going to ask today to be included a LITTLE bit in the changes. They are trying to not stress me with decisions.

Getting help means giving up stuff I never imagined. 

Dog blazes trail in deep snow for me now, she likes it, suits her nature. She plows our path with her wide body so I can make sure furnace vent stays clear of snow drifting twice a day.  So like my Dad, we never give up.

This is photo of me and my dad. I flew copilot for him after age 13. I miss my dad and am so grateful I got to take care of him when he had ALZ.

Image may contain: one or more people

so grateful to have my friends here, new and old. I can take an hour to convey my thoughts, so grateful I can still type.

I feel your support and comfort. Love you all!