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Reply by Xenia
16 Jan 2015, 5:23 AM

Dear Frustrated and All:

Please do not feel guilty about your fears and worries.  I too felt that way when John was ailing more and his dementia was becoming worriesome.  Not to the point your husband has but when he fell and hurt his head this brought on more of the dementia and I too was worried about sharing when everyone else had larger problems.

I do believe I shared that John was so mixed up wanting to leave the condo, etc, at the point where he wanted to push me, etc and we had to call the ambulance and 3 police cars came as I had told the operator John had dementia and was becoming violent.  First question from operator: Do you have any guns in the house":  No, then 3 police men came, etc. etc.

I feel for your as this actively dying was what John went through even though the drs didnlt say.  It is hard to see the changes, the desire to live and the need to pass, this is what we went through and thank goodness he never had to be placed in a care home as the doctors, hospital and I felt I could no longer care for him no matter how much I loved him and cared for him for nearly 2 years.

His higher power took over and as I stated he had a stroke and passed the next morning.  I grieve, but I like you have been grieiving for over 2 years with his illness's.  Now it is tears I am shedding for all the time we missed with his illness but I am thankful for a death where he went to sleep after his stroke and his last words to me and the family.  

My heart goes out to you and all who are caring for their loved ones, the anxiety, uncertanity and questions go on and on and then when it happens it seems sureal.

I wish you well and pray that your husband will find peace soon and not have to go through all the illness he has and that you find rest soon knowing you did all you couldand as my doctor said to me when I was upset about John being so agitated and agressive, " You did all you could, you were a good wife, a good nurse and you cared for him for so long...now you cannot look after him at home and you are not safe"  I cried as it was hard to know I was not safe.

Off he went to the hospital and passed before he could be placed in a care home.  Somewhere there are angels and they hear our prayers and often they are answered.

I pray you will have a caring angel help you and help you get some rest and give your husband rest and peace.

Love and Hugs


P.s.  I will write about the rememberance we are having on Saturday.  Our children have taken over and arranged this.  It will be in our daugher's home.  It will be small as most of John;s peers have passed and our family is not large but it will be a time of tears and laughter and rememberance of their father, grandfather to one grandson and to me, his wife. 
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Reply by Xenia
17 Jan 2015, 4:50 PM

Good Morning All:

This appears to be my worst day, morning, ever, in all the time John has been ill and since his passing.

I am crying and laughing.  Then I was in the shower having a good weep and all of a sudden I said "I can;t do this, I can;t do this,"  To-day is the rememberance gathering we are having at our daughter;s home.  

Then out of the clear, my mind changed and said : Yes, you can , you can do it, I know I can, I know I can"  Just like the little engine who could.  So, guys and women, I know I can and I will go an honour my husband, be with our children and grandson and his fiance, our friends and I can do it.  I know I can honour John and remember the good times and of course have a few laughs.

All for now, I Know I can do it, so off I get ready to go.

Love and Hugs to All

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Reply by NatR
17 Jan 2015, 5:36 PM

Yes you can xenia
just like the little engine that could :)
if you cry and laugh all on the same day - it's okay

your family will do the same
john was such an important person for all of you - it's not easy to turn off the feelings and emotions 

sending you energy and hugs as you remember John
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Reply by oldbat
17 Jan 2015, 6:39 PM

Yes, Xenia, you absolutely can.  You have been like a great tree, strong and stalwart in a forest of grief.  And you will continue to be strong but, like a mighty oak you must , from time to time, obey Nature's dictates and shed your leaves.  And, again like that mighty oak, you will put out new leaves and reach to the sun.

Your sun will come again, Xenia.  In the meantime honour your wonderful husband and rest easy, knowing that you did your very, very best.

Peace and healing,

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Reply by NatR
18 Jan 2015, 4:36 PM

Hello everyone

i have been thinking of you - I send you love and hugs and hope your real life family squeezed you warmly and reminded you of all that you have been to John and everyone :)

old bat - this is for you
    • Chocolate comes from cocoa which is a tree ... that makes it a plant which means ...chocolate is Salad !!!

Hugs NatR

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Reply by Nouce
18 Jan 2015, 6:26 PM

Dear all,
   It's been a really hard week! Pablo got accepted into a five day respite care program so I was going to take long naps and have coffee with friends. When I called him the first afternoon, though, I learned he had been wandering the halls of the institution. So I frantically called the hospice nurse and drove to the home. It turned out hospice had not sent his file, no word that he is a fall risk and is cognitively impaired so cannot judge his own abilities. I wanted to bring him home right away but the nurses there said with my info they could change his care plan and I stayed till I saw them install the bed alarm. Now trying to calm down, so I  do get a bit of respite before he comes home. I also told the hospice nurse I want to know how this could have happened. Feeling crazy.

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Reply by oldbat
19 Jan 2015, 3:17 PM

Thanks for the thought, NatR.  Unfortunately I'm struggling with a really bad bout of gastroenteritis.  So limiting myself to bananas, water and broth.

Not fun!

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Reply by NatR
19 Jan 2015, 6:17 PM

Dear old bat,
that doesn't sound pleasant...hoping you soon feel better

it was just a funny line to give us a reason to enjoy chocolate...but in Light of what you are going through...not about to happen.

feel better wishes  coming your way.
hugs NatR  
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Reply by NatR
19 Jan 2015, 6:21 PM

Dear Nouce,

i li am sad to hear what happened at the hospice centre.  It is so hard to get all info to all staff but it sounds like it should have been a better and safer experience for pablo.

its doubly painful to give up your loved one and feel guilty about time for you~ and then feel like both of you were betrayed ..and left hanging  
i do hope the next few days give you the relief and rest you need.
sending you my thoughts,
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Reply by KathCull_admin
19 Jan 2015, 7:09 PM

I have been away for a couple of weeks - my daughter is volunteering in Guatemala and I had the opportunity to go down with her.

I have missed you all.

Oldbat I am sorry about your GI problems - not only does it restrict your ability to get out, but it is so uncomfortable and tiring. I imagine it interferes with your visits with Karl - has that been manageable for him? for you? 

Nouce are you now able to get those naps and coffees? Without guilt and worry? I hope things are more settled, but it may take more time and good experiences to trust.

Xenia I hope you too are able to get some rest - you are probably more tired than you realize.

Like NatR, I am sending you my thoughts.  I am very glad I 'know' all of you.
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