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Reply by Xenia
04 Feb 2014, 5:44 PM

Good Morning All:

Rereading the messages and found so much compassion and understanding .  I was taken aback about Rose Coloured Glasses as that describes my husband completely.

He has a positive attitude about his health condition and as has been his life long trait worries about nothing.  I know how hard it is on you Melinda as you carry the load of worrying,caring and all that goes with an ill partner.  Getting on line is the best thing I ever did as there is more understanding here than speaking with family, doctors, nurses, etc as we are part of this and all the good and helpfulness these people give us they leave and we see the patient and live with them 24/7.  I appreciated the help from family and professionals, however, had to learn to live the other hours with a husband who is ill and needs my help all the time I was seeking help for myself. 

Many hands make the work load easier one of the ladies I worked with told me and this can also be used for us who need many hands to make our load easier.

Take care and best wishes to all.

Xenia
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Reply by marstin
08 Feb 2014, 2:01 AM

Hi Melinda,

Just wondered how you are doing? How is the juggle with work and home going? Anyway, I hope that when you feel like it that you will give us an update on everything.

Hugs,
Tracie
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Reply by Melinda
08 Feb 2014, 3:32 AM

Thank you all for responding and caring. Its so comforting! Nothing much new..my husband, Stan had chemo a week ago so we are waiting for another appointment.
I decided about a month ago to start taking care of myself. I had stopped eating properly and gained weight. I quit exercising and caring for my appearance...I was a mess and very stressed.  So slowly I have started...first, a good haircut! Then a Doctor appointment to take care of stomach issues I have been ignoring. (Probably stress, but getting tests to rule out anything nasty)...finally went to the lab and had blood tests...the Doctor had ordered these almost a year ago...and of course I never had "time" to go. Finally went for that eye checkup and ordered new glasses...finally got the dental work done I had posponed. Finally made time to have a nice lunch with my daughter in a restaurant. I am still working full time but thinking of reducing my hours. Its funny to wake up one morning and think..what the heck am I doing to myself??? Just because I am "waiting". Waiting of course for the end....but I will be absolutely no help to my husband if I am sick and tired and worn out...so glad the "lightbulb" went off over my head...now lets hope it keeps shining brightly!!  Melinda X0
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Reply by marstin
08 Feb 2014, 6:28 AM

Hi Melinda,

Although you say not much has happened, I look at the list of things you have accomplished recently and wow, it's impressive. Actually it makes me realize just how badly I've been treating myself for quite awhile. Like you I haven't gone for tests ordered by the doctor long ago or even gone and gotten my hair done for many months. My weight went the opposite way and I need to start eating more and properly. I guess the point is that self care really is important.

Im sure in many ways that working full time keeps your mind occupied but it must be exhausting to do that and be caregiver too. It seems like when a person is faced with battles like this that your priorities shift a lot and you realize what really is important. It's definitely an enlightening time. For myself I found an inner calm and so much patience that had never existed before. I guess it was an acceptance. All I know is that I felt so focused on what I had to do. This calm stayed with me long after Len and my mom passed away. I must admit that I miss that feeling.

Hugs,
Tracie
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Reply by Melinda
08 Feb 2014, 12:17 PM

I think self care hit me over the head! I feel a kind of lightness and my depression seems to have lifted alot...and I wonder if its because I know the end is near (awful as this sounds).
When he was first diagnosed it was terrible for both of us and for over a year its been a huge battle...with treatments, running to appointments and waiting, waiting, waiting. Now I know the waiting is almost over and I feel glad...for him and for me. (awful as this sounds). I know I am going to be absolutely shattered when it does happen and he dies...but for now it's a weird comfort to know it will end.
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Reply by marstin
08 Feb 2014, 11:18 PM

Hi Melinda,

Watching the person you love suffer for such a long time, is a tough thing to do. Although you are there physically, it sounds like you have resigned yourself to what is going to happen. Your grieving has already begun, the numbness has set in. I think our minds tend to find ways to protect us from the full impact of the inevitable. The day that Len passed away was to have been our wedding day. He decided after being together for 23 years, that he wanted to get married. I remember getting things ready, trying to find clothes that would fit him, thinking about how I would manage to get him over to my mom's where the wedding was being held and yet I  knew in some way that it would never happen. At 3am that morning he passed away. I remember going through the motions of trying to contact everyone that was supposed to attend the wedding and people marvelled at how I methodically made the calls to say that he had passed away and there would be no wedding. I was almost emotionless. The following day my mom went into the hospital and for 7 1/2 weeks I floated along and knew deep inside that she would never come out of there but I was so calm. All it took was my brother's insensitivity by allowing his wife to clear my mom's bedroom of all of her clothing without discussing it with me about a week after, and I broke into a million little pieces. I have struggled since then to try to pick up the pieces and put myself back together again.

This week I will take a page out of your book and at least go and get my hair done. I owe it to myself to start taking steps to make myself feel alive again.

Hugs,
Tracie
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Reply by Melinda
09 Feb 2014, 12:41 AM

Awful about the wedding that did not happen. So sorry! When my husband was told he had cancer he wanted to get married. We had been living together for 22 years and it surprised me. So we got married and that was one and one half years ago. I had been married before (widowed at 24 with 2 small boys) so it felt special to marry again.
I have found that there is always someone for me to get really mad at. For each tragic event in my life I have raged about someone. When my youngest daughter died (car accident)I got really mad at my sister. She is an alcoholic and came to the funeral drunk. I remember being so angry! But keeping it to myself...
And I know when my husband dies it will be my husbands sister. She is very over bearing and just not a nice person...has a mean streak in her. So I am sure I will focus on her behavior and get through it all. The anger will keep me sane in a way....
Yes you owe it to yourself to start somewhere and even a small step like getting your hair done will make such a difference...you go for it!!
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Reply by Melinda
10 Feb 2014, 1:56 PM

An issue came up last night. My husband needed something from me and rather than walk up the stairs from the basement he pounded on the pipes with a hammer (I thought he was lighting a fire and chopping kindling). Then he apparently shouted for me (I thought he was calling for our dog). Finally I wandered downstairs and he was in a rage that I had not responded...it escalated into a shouting match and me going back upstairs. He is perfectly capable of walking up the stairs to get my attention. He spends alot of time in the basement because he smokes and watches TV down there. I have no idea what happened but I was really anger with him for behaving this way. I am thinking of buying an intercom system or maybe a HUGE bell that he can bang when he needs me!! Any ideas...thanks (I am kind of chuckling now...but really!!!!)
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Reply by NatR
10 Feb 2014, 2:09 PM

Morning Melinda,

this is sounds to me like something that needs your doctors advice?
having worked with a lot of dementia clients - you expect out of the ordinary responses from them....
this sounds like something you should talk to one of your husbands medical professionals about - at least for your peace of mind.

there could be some kind of change happening?
let us know how today goes:)
thinking of  you today. Best wishes
ps a baby monitor might alert you the best - and he may not be able to figure out how to use an intercom or even a bell to ring - depending on what's happening inside his body / mind?

just a gut response to your note and in no way is it medical advice
hugs NatR  
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Reply by Melinda
10 Feb 2014, 2:27 PM

Funny, I was just coming back to post that I thought a "baby monitor" would be the best solution! Thanks, I will talk it over with the Doctor when I see him...still frustrating that he thought I was ignoring him..weird!
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