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Still Struggling 
Started by grammakim04
07 Dec 2014, 5:08 PM

I haven't written on here for so long because I have felt so lost.  My husband is still with me and his health continues to fail.  I have him at home with me as this is his wish.  It is very difficult for me as I have my own health issues (osteoarthrits & fibromyalgia & sleep apnea).  It's been 2 1/2 years since he recd his diagnosis and was told he was lucky if he survived 3 months.  He has both caroided arteries in his neck completely blocked and is inoperable due to the density of the blockage and location.

It's been so hard seeing his health decline, with almost daily TIA's, constant brutal headaches, declining eyesight, fatigue, limited mobility and the constant fear that "this could be the day".

The last 3 months have been the worst.  I just don't know how he makes it thru each day but somehow he does.

He actually stayed in a hospice for 6 weeks but then the Dr. there sent him home stating he would be better at home and I should be okay to take care of him a "little longer", that was six months ago.  I am so exhausted.

He comes from a large family and for some reason they have turned nasty on me.  We have been married for 30 years.  This started after he had the stay at the hospice, they just went nuts on me, accused me of trying to get rid of him, etc.  It's been horrible for me.  As for my family, my dad has alzheimers and is in a nursing home in another province.  I just can't offer much support to my mom and my sister is very angry about this.  I call my mom when I can, but beyong that, there just isn't much more I can do.

On top of all of this, my step son, freaked out on us this past summer and has accused us of horrible lies to other members of the family. (he is 40 & unmarried).  He actually stole our wills and he and his mother had the nerve to yell and scream that they are not included in Chuck's Will.  I was horrified.

First of all, I came into Chuck's life long after he was divorced from this person.  This woman has been a nightmare in our life.  Even now with Chuck dying, she is telling people such horrible lies about us and convincing her son also who is so emotionally damaged by her.    I just don't know what to do. 

I'm trying so hard to just deal with caring for my husband and I have all this other crap going on around us.  We have 2 kids of our own plus Chuck has another son with this woman who has broken ties with his mom because he has seen thru her lies and deceit.  It is such a sad situation.

I just find myself so angry at his family who are even listening to these lies.  No one calls anymore to see how Chuck is anymore.  It truly saddens me.

I don't know how much time Chuck has left, our family doctor is unsure if he will make it to Christmas.  I'm doing my best to be happy around him and keep all this family drama away from him.  Our 3 kids & their families have been wonderful with their encouragement and love.

I do appreciate the posts of others, it does help.

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Reply by jorola
07 Dec 2014, 8:25 PM

Oh Kim. My heart i breaking for you. No wonder you are exhausted. Yet i can tell how strong you are. Depite of the the struggles you continue to do your best for Chuck including trying to keep a positive atmosphere.

Do you have homecare/nursing coming in to assist you? Sorry if i am not remembering the details of where you live.

As for all the lies. Eventually the truth will come out. All you can try to do is ignore them and foucs on you and CHuck. I know that is way easier said than done. Especially seeing thechildish depths they have gone to. Who steals a will? and the ex-wife you actually thinks she should be in the will is just laughable. However saying that I would bet a million dollar my husband's ex-wife would be the same. She is constantly bugging their daughter for updates on her dad and not being so kind about it. She actuallys asks, "Is he dead yet?" I mean...wow.

Hang in there Kim. Come here and vent away to us.

May you and Chuck find rest, peace and love.

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Reply by oldbat
07 Dec 2014, 11:45 PM

Dear Kim,

I echo Jorola.  You are totally exhausted from all you have been through.  And, no wonder.  I can feel for you you in so many ways.  My husband, too, has been very ill for over 2-1/2 years.  A catastropic stroke that robbed him of speech and paralyzed him down one side.  And, also like you, I had to deal with the constant criticsim, complaints and patronization  from his daughters, who simply dumped him in the long-term care home (I'm handicapped, so can't look after him) and essentially abandoned him.  I've been coping on my own all this time, and been hospitalized twice for several weeks for what my doctors called "care-giver burnout".  During my last hospitalization this fall, I found the strength to divorce the daughters.  Best day of my life.  I can no longer live a lie and the fake "happy family" front I was supposed to put on on all public occasions sickened me.

My advice to you:  simply refuse to engage with the toxic family members and concentrate on the loving, happy family you and Chuck built together.  I do know that this is much easier said than done.  But to continue coping with all that c**** could, as you so wisely noted, destroy you.  I divorced my lot by e-mail!  Not kind, but who cares?!  You could do the same.  then just shrug your shoulders at the inevitable fallout.  It's their problem, leave them to it.

I may sound like one, but I am most definitely NOT a heartlesss bitch.  I care very deeply for Karl, just as you do for Chuck.  And anyone who doesn't treat him with the love and tenderness he so badly needs and deserves, is out of our lives.  Like you, we don't know how long we have.  And, like you, his happiness is my priority.

On re-reading your post, Kim, I was struck by the incredible strength and grace you have shown.  Maybe it is now time for Chuck to go back to hospice.  That stupid doctor was totally wrong in the way he treated you.  He should be reported.  His behaviour goes against everything the hospice movement stands for.  Chuck should be being cared for in ways that you can no longer do.  And you need to know that he is comfortable and at peace.  He will be even more at peace if he realizes you are more rested and relaxed around him  Then, together, you can make the most of the time he has left. 

Sorry for the long screed!  I was just so angry when I read about all the abuse you've put up with, and the callous way in which you've been treated.  Ignore them all, Kim, and concentrate on Chuck and your children. 

I'll be thinking of you, and praying for you, as we all will.   Please drop by and let us know how you're doing.  We do care.

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Reply by grammakim04
08 Dec 2014, 3:10 AM

Thank you for your kind replies. 

Today I deactivated my Facebook account, just couldn't handle some posts on there, ex wife was friends with some of my husbands family and posting on their walls, it was just upsetting me too much, so I decided it was the best thing to do.  My kds agreed, don't need any further stress in my life.

Spent the day sewing and working on a quilt, I am so thankful I have this hobby, it is my lifeline right now.

It was encouraging to see that others  have similar family issues to deal with.  You are just dealing with so much with caring for your spouse and then all this family crap just pushes you over the edge, its just too much.

Take care.

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Reply by oldbat
08 Dec 2014, 2:19 PM

Congratulations on deactivating your Facebook account, Kim.  That's the first step on your own personal journey to peace.  Toxic words, whether spoken or written, have no place in your life now.  The kind, caring words of your own loving family are all that count.

I am so envious of your quilting talent.  What a wonderful hobby.  Please post a picture of the one you're working on, when it's done.  We'd all love to see it, and to share in something that makes you happy.


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Reply by KathCull_admin
15 Dec 2014, 1:49 AM


Oldbat on a thread Kim posted to I'm so exhausted, Kim gave a link to her pinterest page http://www.pinterest.com/grammakim04/hugs-by-gramma-kim/ –with pictures of her quilts.

, I just did a little google search on quilting and read that one study showed that quilters have improved well-being in ways that physical and outdoor activities couldn’t. From what I read, it sounds like quilting is a lifeline for many others as well.

You and Oldbat have both made positive change in your lives, that I am sure were not easy, but in the end seem to have given you some freedom.

In an earlier post you mentioned that the healthcare providers could not believe how you were managing all Chuck’s care on your own. Do you have more support now? Are there friends who provide support – come in for coffee and conversation?


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Reply by grammakim04
15 Dec 2014, 3:27 AM

Hi Katherine

Unfortunately, I am doing it all on my own.  Chuck is no longer able to attend the Adult Day Support Program, which was my respite relief.  Homecare has become a nightmare for me to deal with.

When Chuck came home from the hospital last June, Homecare decided to move him out of the Palliative Program and just put him into the regular Homecare program, even though he still has the life threatening diagnosis and could die at anytime.

When the regular homecare hurse came over the first time, she let us know there were very little services available to us under the regular homecare program.

I talked to Chuck's doctor and he was quite upset by this.  Homecare's arguement is that Chuck was under Palliative Homecare for over 2 years and is still living...they feel he no longer qualifies for the program.

So much stress to deal with.  So I surround my self with my sewing and quilting which I totally love....trying to do the very best I can, but I am so exhausted.

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Reply by oldbat
15 Dec 2014, 2:26 PM

Hi Kim,

Are you sure that this is actually a Homecare decision, as opposed to being that of one functionary?  I suggest two things:  first, e-mailing Homecare head office and outlining your case and second, calling the head office and speaking to whoever is in charge.  It is simply unconsionable that someone should be penalized for daring to live too long!  I am wondering whether/if Chuck's doctor actually advocated for him at all?  If not, he/she should start now.

I realize that this might seem to be too much for you to handle right now.  BUT if it does bring positive action, you will be glad you did it.  I know, I had to do this with our social services for myself back in the summer.  I got a phone call in less than a day and increased help within a week.  You know what they say about the squeaky wheel!

BTW, if you need any help with the e-mail, just let me know.  I'm a professional writer!

Be kind to yourself, Kim.  And accept ANY help that anyone offers.


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Reply by KathCull_admin
25 Dec 2014, 4:19 PM

Thinking of you on this Christmas morning Kim.
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Reply by moderator | modératrice
19 Jan 2015, 3:19 AM

Hi Kim,

How are you tonight? Any improvements on getting respite care for yourself? What support are you getting from homecare or palliative care? 

I sure hope the situation isn't the same as it was a month ago. It's tough handling all this your own. 

OldBat, I'm so glad that you are part of this thread. Your situation definitely shares similarities with Kim's, or a least similar enough to lend empathic understanding. I hope you continue to connect.

Stay warm all.

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