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Reply by KathCull_admin
30 Nov 2014, 9:53 PM
Xenia, it seems to me that the answer to this question is very important because it will help you make decisions as you care for John.

Your doctor and visiting nurse seem like very accessible, supportive people  - and you may already have talked to them about your concerns. But if not, do you think of asking what they think about the changes you see mentally in John and how afraid you are? I'm not sure how you feel about this, but my fears can often be alleviated by knowledge. 

Thinking of you.
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Reply by NatR
30 Nov 2014, 10:09 PM
To all members writing on the thread - it seems that the caregiving duties are multiplying - and for you Xenia - Katherine has given you some wonderful advice . Speak with the Dr and nurse who know you and John best 

there comes a time when it is too overwhelming and exhausting to continue to be the 24/7 caregiver.
share your concerns and listen to their advice.  I think that you have done such a wonderful job for so long - but as another writer has shared her story about easing the caregiver burden by placing her husband - I see that there is a point where a new approach is needed, and it's not admitting failure - far from it

i hope that in the coming days you will gain perspective on all of this - and know that you are doing the best for John - not at all abandoning him:)
sending you my thoughts
I haven't written for awhile - but I watch the notes go by:)
hugs NatR
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Reply by NatR
30 Nov 2014, 10:22 PM
Hello to Nouce Jimmie Frustrated old bat VJ 
did I miss anyone?

hello and what gteat support you are for each other.  It almost feels lIke we are Peeking into your windows - lamps glowing, TV or radio playing, perhaps a candle or fireplace warming the view - and each of you gaining support encouragement and such friendship despite the miles and the anonymous connections.

this is a heartwarming thread to read.  The feelings of stress guilt and exhaustion are met with hugs warm thoughts and agreement that each of you are doing "the extra mile".

i particularly must mention Jimmie who has the gift of letting us "see" inside his roU time and his need for space and quiet time of his own.

yes how we all crabe that  - and rightfully so.  It is how we recharge our batteries to keep on for another day, it's about balance.

i send you all best wishes and include Xenia who has shine her light for her husband - As you all do;)

be good to yourselves  as well
thats my message tonight
hugs across the miles
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Reply by frustrated
02 Dec 2014, 4:43 AM
It does seem like we know each other, we are all connected by the cominality of our trails.
So today I took my husband from the hospital to a care center. His confusion(demntia) was bad enough today that he didn't put up a big struggle. But did put plenty of guilt on me. He has beens o dependent on me, and I have allowed it that he wants me there all the time. I did spend most of the day with him as it is his first day and everything is new.

I feel numb, but at the same time angry with him for being so clingy and not even trying to see how much I need some rest. And then I feel guilty for feeling angry with him. So emotionally I have kinda shut down just to get through the day. Needless to say, I am exhausted mentally, emotionally and physically. Right now I could do with some hugs and a shoulder to lean on.

thank you all for being there
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Reply by NatR
02 Dec 2014, 5:28 AM
Hello vj
Your note just arrived as I was ending my day. i just wanted to leave you a reply to let you know that you have done the right thing for the both of you - in my humble opinion 

your husband will not understand why things are different - no matter how hard you try to explain it.  That's the difficult thing about dementia.  Explanations aren't what are needed - just steps in place to rescue you both - you from the exhausting caregiving at home -and a circle of round the clock caregivers for your husband 

just imagine how good it will feel to sleep U disturbed and be able to visit your husband refreshed and without so much stress.

i can relate so much as I have worked in facilities as well as caregiving at home
i was the Last one to realize just how burned out I really was.  On top of the exhaustion I too felt the guilt - it eats away at your insides and it's a struggle 

but I am glad you made the decision.. Now rest and know that you did a good thing.  
Its still a difficult decision but in time you will begin to feel more energized and capable of supporting your husband and making decisions for him

i am proud of you;)
sending you thoughts and hugs from my corner to yours
NatR 👍 
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Reply by AdoptedSon
02 Dec 2014, 5:40 AM

Just wanted to say that what you did, takes a lot of courage. No one truly realizes just how hard it is, to do what is right, for the person you love so much. What you did, was right, the proof is in the quilt you feel, because only people who truly care, have such thoughts, such feelings.

Hugs and more hugs for you.  Try to let yourself move forward, knowing that you have some respite, so you can continue to be the loving and caring partner that you are.

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Reply by Jimmie
06 Dec 2014, 11:30 AM
Had a traumatic week with our youngest granddaughter, Maud, who has an undiagnosed life-threatening complex blood disorder which has left her very critically ill numerous times throughout her two year old life.  THis week was one such event, and at this point we are all exhausted from the constant stress and worry.  I can manage Sarah's illness, but when our children or grandchildren are seriously ill, I pretty much come completely undone.

I was wondering  this morning about all of you but in paticular about you Frustrated, and how things are working for you now that your partner is in residance at a nearby facility.  I was also wondering about you, Xenia, and the concerns you expressed about your partner's increased dementia? How are you both doing????


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Reply by frustrated
06 Dec 2014, 7:26 PM
Thanks Jim for asking. My heart goes out to you and for your grandchild and family. I send hugs and tears for your presious baby.

It has been a hard week of adjustments. The hardest is Gary's dementia, his mood swings. I dealt with my mother's dementia, but this is so different. I never know when I go to see him what mood he is in. If he is angry, I can't refocus his direction. He gets stuck on one thing and rants at me. It is his acussing me of not caring and wanting to see him suffer that is hard to take. There is no way of even reasoning with him. I just don't know how to handle this new phase. I could deal with his confussion and all that, but the hostility is so hard. I know that he doesn't really mean what he says, and that he is sick and misserable and unhappy. But it is hard.

He still is anxiouos and restless at nights and the nurses aren't sure how to get him to settle down. They are going to talk to the Dr about adjusting his meds.

So we all struggle on.

Take care all of you and lots of hugs.
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Reply by jorola
06 Dec 2014, 8:15 PM
VJ and Jimmie,

I wish i knew the perfect words to provide comfort and encouragemwnt but i don't. My thoughts are with you all and sending peaceful vibes and hugs your way. Know that you are not alone.

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Reply by Xenia
06 Dec 2014, 8:20 PM
To All:

Jimmie my heart goes out to you and to your granddaughter and Sarah.  You have had much too much on your plate and yet you are there for all of us who flounder around in our time of despair and need.  You help lift our spirits when they are at the lowest ebb with your kind and caring words.  Somewhere in your life you must have been a poet or a repressed poet that is now coming out to share your words with others who appreciate the sympolism and the strength of your words.  How is it that we can love someone in the abstract but I do believe we love you for all you are.

To-day has been an up and down day.  Daughter left with our son for Vancouver, I live in the valley and daughter was at our home yesterday evening.  She and her husband drove over to have dinner with us and our daughter who lives here was also there.  Gayle, baby of the family stayed overnight.  Son, John came to pick her up in her truck to pick up a chair I had to move out as we will be getting a hospital bed for John sometime next week.  The bed we purchased from Sleep Country is good but does not have side rails so we are moving furniture to accomodate the hospital bed that palliative care provides.  We are fortunate that our family is so supportive, of course Gayle the youngest one and our oldest daughter seems to know how to set up for rehab, etc.  I sit back and let them go to it as they are adults and see things clearer than I do at this time.

John has gone down hill quite quickly with his dimentia.  I spoke to the Palliative care nurse and we agreed John should stay home.  He is comfortable here, I get plenty of help and will be provided with more hours as his dimentia and cancer-heart-diabetes-kidney problems progress and then make a decision for hospice or what needs to be done.  I would have to travel by bus to a care home or hospital if John was placed there as I do not drive.  Have no periferal vision so never learned.  Also, at home he will have regular baths, clothing and bed changes regularly as Hospitals are so understaffed, as we learned when he was in hospital for a month a year ago that we did all the baths, feeds, etc.  The palliative care nurses are great and have helped me a lot.

John has forgotten his childrens names at times.  Even asked me who I was to-day as he is losing more eye sight and is very deaf even with hearing aides.  He has macular degeneration and it has gotten worse, also one blind eye.  As the kids noted, dad answers to your voice not ours.  Thank goodness he is not demanding as yet and is easy to care for.  Of course, helping him out of bed is difficult so do not do that alone, wait for the care aide or our kids and let him sit in his wheel chair or lazy boy for an hour or so to help change his positions from sleeping hours at a time.

Thank you Jimmie for asking and thank you to all for your messages.  They keep me afloat when I feel myself drifting into self pity.  Your words cheer me up and keep me going for another day and I know all is well with the world.

It is raining to-day and a bit dark so I am going to turn on the fireplace and relax.  Daughter is coming over after work for an hour or soand will enjoy her company.

To all.  Take care.


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