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Reply by Nouce
06 Dec 2014, 11:48 PM

My love and thoughts are with you each one! The burdens seem unbearable! The losses keep rolling over us. Knowing you are there still helps keep a small light shining where I sit. Pablo was more chipper today despite grey rainy weather. He even helped me debone a chicken!

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Reply by jorola
07 Dec 2014, 2:12 AM

Xenia i am glad you are getting some more help for John and yourself. I do worry about you.

Nouce it is the litle things that count the most isn't it. Mick turned 41 a few days ago. When he first got his diagnosis here was told he would not make it to his next birthday. Instead we have been enjoying time together and even almos finished Christmas shopping. Normally we are last minute people so this has been very nice for a change.

Sweet dreams all.
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Reply by Jimmie
07 Dec 2014, 11:48 AM

I am not sure what to say this morning.  I go to bed exhausted from my anxieties and wake up with the same demons sitting at the foot of my bed ready to take up residence in my gut for another day.  They have an inexhaustible appetite for my innards.

Anyway .... we have not spoken too much about dementia on this thread. Frustrated, you have mentioned how hard you find your partner's verbal hostility inflamed as it is by his illness.  I find myself in similar circumstances.  There are moments when Sarah explodes as if possessed, vomiting vile abuse at me.  The hatred she expresses for me at such times is unqualified and absolutely caustic.  I know, as you note and as others counsel, that it is "the disease speaking".  However after days and nights of caring for her in every respect, that rational explanation brings little comfort.  It is a paper thin shield  in the face of her acidic onslaughts.  There is a part of you that can't help being hurt and broken by such abuse.  It is the heart that is wounded, not the head, a heart that is already weakened and weary.

Nevertheless, for me, there are still restorative times.  Sarah loves the flow of warm water on her back when I shower her in the morning.  She loves warmed apple crisp mixed with cold ice cream, she loves wild flowers, and James Taylor, and Carole King; she loves looking through old photo albums, and the company of our two grandsons who live in the area and sit up on her bed with her for Saturday cartoons, she loves cold smoothies, and lemon mirangue pies (without the crusts), and bites of chocolate, she loves sitting in the sun in the summer, and purple sweaters, and soft towels.  Best of all, she loves when I get her ready for bed and cover her with a warm quilt.  She takes her glasses off, rests her head on the pillows and listens to Mr.Taylor, or Stevie Wonder, or Carly Simon until she falls asleep.  It is then, when the illness retreats slightly allowing her facial muscles to relax, when she is safe and content in her big bed, when the house is still and the phone not ringing for the moment with other alarming traumas, that I see her again, find her again, love her again, care for her again.  She is as lovely at such moments as she ever was and my heart is broken all over again but softly, softly.

I have said enough.  It is December.  In a few weeks we will turn back towards the sun again.  May all your lives be lightened in that turning.

With affection

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Reply by oldbat
07 Dec 2014, 3:02 PM

Ah Jimmie, and most of all she loves you.  Everything you mention are moments you have given    her or are giving her now.  Her anger is her way of expressing the terrible fear she must surely feel at the cruel way in which life has treated her.  Her anger is her way of fighting back.  Her anger is sheer, unbridled rage at the loss of everything she cherishes, most of all YOU.  You are guiding light, her tender, caring love, her lightning rod.  Never forget that.  She doesn't.

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Reply by NatR
07 Dec 2014, 3:14 PM

Dear Jimmie and every single member of this forum and this thread.

Jimmie your words blew me away
you stated so clearly and with such love  - the  lot of a caregiver, the reason you do it, the reason every one of us does it - for Love and devotion to that person.

you shared with all of us  a peek inside the window of your world.

i believe you have a book inside you
there  are  very few books by caregivers to encourage and assist others in understanding just what it is, what it takes and what "outsiders" even other family members and friends need to know;)

i do do hope that your writing gives you comfort - as it gives me comfort / seeing the person with dementia as they used to be, as they are now and how you cannot forsake them

i wish you a good day today - each of you who are sharing your personal journeys with all of us
be encouraged and know you are appreciated for who you are and what you do each day
best wishes and massive hugs to each one
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Reply by Nouce
08 Dec 2014, 2:23 PM


Your words and word pictures make me cry, almost every time. But it is good crying, cleansing and hopeful in the midst of pain. Frees me from trying to hold things in. I love you all.


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Reply by Xenia
08 Dec 2014, 9:12 PM

Greetings to All:

Another day and time seems to change in a blink of an eye.  Jimmie, I am so glad you are writing about dementia as often with elderly and very ill family members dementia is forgotten or put on the back burner putting all interest in the diagnosed illness, cancer, copd, heart etc.

I often felt that to speak of John's failing memories, his faltering steps, his forgetfullness, this took away from his other illness', as I mentioned before when he was in hospital I brought his first bout with dementia to the nurses attention and they pooh poohed me as they thought I was seeing things they had not.  Being married to the man for 58 years I was more aware of his moods and other things than they, but I was told not to worry.  Not to worry, how indeed when he saw his grandson on TV who was a coloured basket ball player, movies being made at night through the small holes in the curtains serpeating the beds.  So we moved on to where now John keeps asking why, why am I sick, the cancer is gone, where is the doctor and nurse, and finally the one that really hurt was when he asked me who I was.

He still has his beautiful smile, he cannot see much anymore due to his macular degeneration and blind eye, but he sees the kids most of the time.  He asks for them, he still has his manners and eats slowly as he always did, he tries to help himself in the shower when the aide is bathing him.  He is polite, except to me to-day, lol, I hurt his arm not knowing my nails were rough.  He asked why I was hurting him.

What a journey we go on with their dementia, always being with them as they cannot be alone.  John does sleep alot and is very weak when he wakens so the day goes, ever watching over him and asking myself, which is worse his cancer or his dementia.

The nurse called to-day, I will be getting more respite time.  Hospital bed and commode will be delivered in a day or two, all supplies we need will be taken care of, we do pay for his meds but palliative care is being looked after so we are blessed to be living here.

Feeling a bit lost this time of year as I was always baking, preparing the house with decorations but seem to have lost the energy to get into the spirit, mind our daughter put up a small Christmas tree so that brightens the condo.  This too will pass as I know I have to pull up my sox and get out of the doll drums (spelling) and get on with life.

To all thanks for listening.

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Reply by oldbat
08 Dec 2014, 9:27 PM

Hi Xenia,

Know all too well what you mean about not having the energy to get into the spirit of the season.  Mine departed three years ago , when Karl had his first stroke.  But this year, he's coming round to me to celebrate his Christmaqs, December 24, so I'll have to get out of my funk!

Also understand how hurtful the different stages of dementia can be.  Karl still calls me by his first wife's name occasionally.  I try to laugh that one off.  But, when I went up to have lunch with a week ago, I walked into the lobby of his home to find him having a major breakdown.  Although I had told him, several times, when I'd be there, he hadn't heard from me that day and hadn't been able to reach me by 'phone, so had decided that I was dead, and he was all alone.  His major fear.  That took some sorting out.   It also took me a full 24 hours to get over.  I had realized he suffered greatly from anxiety, but hadn't fully realized the extent of it, or how deep it went.

I'm so glad to hear that you and John are eligible for palliative care.  That should make life a lot easier for you and, in turn, John can relax knowing that you are no longer so exhausted.  

Take care of yourself.  I always look forward to your posts.

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Reply by frustrated
08 Dec 2014, 10:34 PM

Hello everyone,

You all are so helpful with your words of advice. This dementia is new to me and I am trying to understand it. Do most have unreasonable anxiety? Gary asks for me constantly. He has forgotten how to use the cell phone, so he can't call me or I him. I write on a white board when I am coming, but htat hasn't seemed tohelp. I do tell the nurses and they try to reasure him that I will be there.

He worries constantly and forgets when I have been there and tells me I never came. He gets angry because he thinks I wan't there when I was there. ANd I have learned there isn't any point in trying to reason with him or assure him that I was there. It is all very draining.

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Reply by oldbat
08 Dec 2014, 11:59 PM

Hi VJ,

Can't speak for everyone with dementia, but I do know that acute anxiety has been very much part of whatever it  is that Karl has.  He also worries constantly, and it is not unusual for me to find up to 12 voice mails when I come back from somewhere even though, like you, I have told him several times where I am going and approximately when I'll be back.   And, you're right, reasoning doesn't work.  If I ask Karl why he called me so many times, he assures me that he never called!!!

I put this down to the fact tha our husbands, like us, are travelling through uncharted waters in a world that has changed radically for them.  There are no familiar landmarks to guide them, no porch light to show them the way home.  The wind is rough, the waves are high, the night is dark and they are oh, so alone.  In Karl's case, this last thought seems to be particularly troubling.  Can't tell you the number of times he's made me promise that when he goes (i.e. dies) I will, too.  I do promise, each and every time and, if I knew how to make that happen, would probably do just that.  Short of a quick trip to Switzerland, Colorado or maybe even Quebec - none of which are affordable - I'm at a loss.  I'm engaging in a bit of black humour here.  Some days it's the only way to deal with the situations that come up.  There is no manual for what we do, it's all trial and error.  So I hope that at least some of what I've said here rings true for someone.  Specially you VJ.

Afterthought:  Karl can't dial numbeers on the phone either.  So his has a speed-dial button that he just pushes to connect with me.  Could Gary's phone be programmed this way?

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