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Reply by pudding
08 Feb 2013, 11:21 PM

Hi Colleen, yes alot has gone. My Mom had gotten weaker and was not keeping any food down, she had a pallative Dr. assigned to her, and he decided she would be better in a hospice. Shes been there since mid- January. She did seem to improve there initially, and was walking, but seems weaker and talking less, eating less.
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Reply by Plum1
09 Feb 2013, 2:41 AM

Hello Pudding,
I am glad that Colleen has reached out to you. Your response is touching my heart and I want to let you know that I am here thinking of you and your Mom.

It is good that she is now in the supportive envirnoment of a hospice. However, it sounds as though it is a very challenging time for you as you watch her becoming weaker, and communicating less, eating less. Is she able to speak at all about how she is feeling? I woiuld sense it is a very intimate time. The main focus is to be present to each other, to connect with love and tenderness as your Mom faces her final days.

If you feel open to it, let us know how you are feeling, how you are coping. I hold you in prayer, and send you energy of love, strength and peace.

Plum1 
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Reply by pudding
10 Feb 2013, 3:05 AM

Hi, she is very strong willed and determined still to be here. She is aware of what a hospice is but occasionally asks if her health will improve and other times talks to me about land my parents have and that my brother and i should share.


Emotionally, physically its really hard - exhausting..there are days that are tough and I don't want to go there..but realize that time is limited. The Doctor still hasnt given a prognosis, and she is still semi-active compared to others in the hospice, she goes for walks around the hospice, again sheer determination. It is hard not to know what to expect from one day to the next.... its the uncertainity....but it is a relief to know she is pain free and in very good hands the nurses are amazing...
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Reply by Plum1
11 Feb 2013, 12:41 AM

Hello Pudding,
Thank you for sharing so much. I can just imagine the tension you feel as you dread walking into your Mom's reality, and yet know that these are probably the last days you can spend with her. The emotional turmoil, as well as the schedule of visits will certainly contribute to great exhaustion in you. Living with uncertainty is also extremely draining, isn't it? How are you sleeping? I hope you have some good people to talk to, and can do some nurturing things for yourself.

Your Mom's determination reveals her strong desire to "live" fully as long as she can. She is amazing! I'll bet you have inherited her strength of will. Your strength is showing itself in the way you have been present to your mother throughout these months of illness. And it shows in the deep love which keeps you going to be with her even on the difficult days.

I am so happy that you can feel secure that she is getting excellent care at the hospice. That, as you say, relieves much stress. May she continue to be pain free.

Once again, Pudding, know that I am walking with you in spirit, sending you love and peace.

Plum1
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Reply by Missy2012
11 Feb 2013, 6:28 AM

Hi Pudding,

I am very sorry to hear about your mom & the strains on you as a caregiver. I have been silently following your post & just wanted to say a big thank you. I am a few years older than you & am in a similar situation. Your post came at a time when I felt alone & had the same question: is my life passing me by? I have found your postings & the excellent responses from other members most helpful in giving me some insight into my situation.

I wish you and your family peace & wellness in this most difficult time.

All the best,
Missy2012
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Reply by pudding
11 Feb 2013, 3:30 PM

Hi Missy, I won't regret the time I spent with her as I know she has and would do anything for me as well. I wish people would be more honest about caregiving and burnout...there is only three of us caregiving and it is exhausting. We have family and friends who visit but its not the same as being hands on and caregiving and taking on the responsibility to ensure your loved one is safe.  I occasionally look back as it has been a whole year this February and think sometimes what I could have achieved then again, maybe we all take life and health for granted and wouldn't have done anthing with the year that has passed.


Please don't feel you are alone, I wish you and your family peace, love and light.    
  
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Reply by Mark99
11 Feb 2013, 10:54 PM

Pudding, Missy 2012 and everyone: I relate very strongly to this discussion the comments as well as the emotions. My wife died 08/07/2011 after two years in treatment and ultimately three weeks in hospice. 

Being a caregiver is hard physically and emotionally but it was a job I closed my business to apply for. How did my counselor at CancerCare.org put it, Donna put her disease in my hands, she gave it to me to manage and guide her. And this was the strongest most independent woman I have ever met. I was honored to be there for her and to have the chance to move our relations to new deminisions and places. But the truth be told toward the end I would come home from my part time job and just sit on the stoop afraid to go up and see the disease see the pain. But I did it knowing it was my job my love my goal my place in our lives. Today I still miss her so much especially since her birthday is Thursday Feb 14. But I know she had me and that what I did was love at its purest. 

One final thought on hospice. It was not for her alone it was for me. It gave me the chance to surrender the caregiver burden and bask in the final time together. And also it was the place for me to gain comfort and care from an iamazing staff who saw me as a patient as well. At the same time I could apply my knowledge of medicine and healthcare to ensuring she had the care she needed.

In the end caregiving is a rip tide of emotions that will drag you out to sea but it is a place to plant a flag and take a stand in the name of love. Hospice is that as well.
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Reply by eKIM
12 Feb 2013, 4:28 AM

Hi Mark99.  Your story touched me because I also am married to the strongest and most independent woman that I have ever met.  We both are still in good health, but of course, that doesn’t last, forever, for anyone.  After 43 years of marriage, someday one of us will be the caregiver for the other.  I pray that I am the one to “go” first, simply because she is the stronger one.


I cannot imagine what you went through over the last 3 ½ years.  That you closed your business and concentrated on her care was, in my opinion, the opportunity for you to be the “best you could be”, as a spouse.  You passed with flying colours.  You are an inspiration to husbands everywhere.


What an act of loving trust for as you said, “Donna put her disease in my hands, she gave it to me to manage and guide her. “  I would imagine that in doing this that she was then able to focus on maximizing her quality of life, rather than being stressed about details, over which she had little control.  What a gift you gave her, Mark99.


When you said that, “I was honored to be there for her and to have the chance to move our relations to new deminisions and places.”, I imagine that despite the raw emotions that you bonded closer that you ever had.  I am happy that you were able to have that quality time to do that.


Every person in your situation would feel the stress, feel the fear, and hurt greatly to see our loved one suffering.  You said, “But I did it knowing it was my job my love my goal my place in our lives.”  You have stated the ultimate “gold standard” for husbands when you stated that. 


Of course part of the motivation comes from knowing that Donna would do the same for you.  But I sense that you did what you did because your love for her compelled you to do “what’s right, what’s good, and what’s moral”.  You state it best when you say, “But I know she had me and that what I did was love at its purest. 


I hope that you have a great support group, Mark99.  Have you gone to a grief counseling group?  They are extremely beneficial for most people.  Did it help you?


I loved your comments regarding hospice, as I have been a resident support volunteer at our local hospice for the last 3 years.  You stated:



  • It was not for her alone it was for me.

  • It gave me the chance to surrender the caregiver burden and bask in the final time together.

  • And also it was the place for me to gain comfort and care from an amazing staff who saw me as a patient as well.


At hospice our only goal is to provide as much comfort as possible to both the resident and the family.


By taking over the 24/7 care, the hospice staff was able to allow you to have quality time with your wife, as you say.  This is probably the greatest benefit of all.


I am glad to hear that when you were suffering, as the family of the resident, that you were able to reach out to the staff and volunteers.  They get great satisfaction in helping you.


In closing, Mark99, I would like to encourage you to tell more of your story in this blog.  The act of writing down your feelings can be curative, even cathartic.  In addition your words can and will help so many others for years to come.


I wish you the very best, Mark99     - eKIm

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Reply by Plum1
12 Feb 2013, 11:15 PM

Dear Pudding,
I am deeply moved by what has happened here in response to you these last few days. You have invited a community to gather. Your honesty and sharing have touched many.

Missy and Mark, thank you for your intimate sharing. It is difficult to put into words how profound and life-changing the experience of caregiving can be. While being, as you say so well, extremely painful and emotionally wrenching, it calls forth the "purest" and most beautiful in us, the power of love. We discover in ourselves what we could never otherwise discover. Giving totally of yourselves, you may feel bereft, but you know at a deep level, that you have given the best of yourself in generosity and courage and selfless love. In turn, the one you have cared for has received a great gift and has grown in trust and love. You describe what humanity is all about, and you offer us all a vision of the hope and strength we can find in ourselves. Thank you for this.

Mark, I too hope that you will share more of your experience. You made some very powerful remarks, and just filling them out would offer so much to all who read this forum.

I feel honoured to be connected to all of you, and I hold you in my heart.

Plum1
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13 Feb 2013, 1:04 AM

Mark99, your description about your experience caring for your wife is so eloquent.  The sentence “Donna put her disease in my hands, she gave it to me to manage and guide her” reminded me of my Mom. It’s exactly what she did, put her care in the hands of my sister and I.

My thoughts are with you as you mark her birthday on the 14th,
GWTBB
  
    

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