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I am feeling exhausted and depressed 
Started by CarolK
23 Mar 2016, 8:19 PM

My husband was diagnosed with stage IV head and neck cancer in August 2014. There was almost six weeks of waiting before his biopsy and scan results were in.  We went from wondering about IF he had cancer to knowing that their was NOTHING that could be done except perhaps some radiation and chemo to slow the progress of his various tumors. They pulled all of my husbands teeth out rather the wait for him to get the necessary repairs before the start of radiation and then decided against giving him radiation as there were too many tumors to concentrate on. This has led to my husband feeling as though the doctors are not competent and he witholds information from them. It has been just over 18 months now of chemo treatments to which he is now at the stage where the cancer is continuing to grow inspite of it all.

I am not healthy. I have had type 1 diabetes for over 50 years now. I was fortunate enough to get disability about 3 years ago at least and my doctor says my bloodwork test results are vastly improved. I keep my blood sugars in the range that they are supposed to be but I feel so exhausted. I make sure to be available for my husband for whatever he needs when he requires it with a smile on  my face. 

I am doing all that I can for my husband.  I have taken over all of the household responsibilites and we are prepared with POA's and wills. Is it selfish of me to wonder when all of this will beccome easier for me? I will miss my husband terribly when he is gone. We have been together almost 18 years now. He is a young man yet. He just turned 48 years old a week ago. His deterioration makes me want to cry but I don't really allow myself to do so unless I am alone. His once handsome face is now swollen with veins running through it and his hair is gone. He is also terribly thin. Sometimes I am scared that this is how I will remember him.

We have some really great friends and some that are demanding his time be spent with them. I feel anxious to have people over because the house is not up to par. I spend my energy on my husband. I have also been more diligent with trying to make exercise a more steady part of my routine. I try to have my downtime too. I read a bit or watch tv to take my mind off of things. I think I am doing all that I can to ease my burden and yet I feel really rundown. Any suggestions?

 

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Reply by KathCull_admin
26 Mar 2016, 1:09 AM

Dear CarolK
Welcome to the community. What a hard time for you both.  

My husband became very ill last year in May. There was a constant lump in my chest - always wondering what would be next. What would we do. At that time I found that tv and reading (+playing a lot of solitaire:) were lifesavers for me. So - I hear you. I also found getting outside really helped clear my mind - but I know it's not so easy if sidewalks are wet/slippery.

Do you have the support of homeare or palliative care?  Programs and Services   provides information on services that are available across the country.

I know that others in the community will join in to support you.  Do you have family close by? I am glad to hear that friends care and are coming by.

Take care CarolK
Katherine 
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Reply by NatR
26 Mar 2016, 8:16 PM

Dear CarolK

thanks for sharing your story and posting it for the group who visit here
my heart goes out to you being so overwhelmed with your husbands diagnosis and needs as well as trying to push yourself through your own limited energy

have you asked about respite care or visiting  caregivers who can give you at least some breaks from being on call?

i hear your fears on how devastating this time is and how difficult it is to keep moving forward and keeping yourself well enough

dont worry about friends coming by to visit - they won't be criticizing your housekeeping - they are focussed on being supportive - and that's wonderful

as Katherine suggested it really helps to focus on something other than the ever present worries - a game, a program you like, a book to dive into, or even perhaps writing when you feel like it - to thid message board 

letting it out by sharing it - your fears, your worries, your feelings - it does help
 write when you can, let us know how things are going - and remember you are just one person and you can only do so much / give yourself permission to close a door, take a walk or short drive, just try to renew your batteries however it works for you

sending you my thoughts
best wishes 
NatR
 
  
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Reply by Marymary
26 Mar 2016, 11:08 PM

Hi CarolK - sorry you and your hubby have to go through this - not a part of life anyone wishes on another for sure.  But in saying that I do understand what you going through and its a touch road for you and your hubby - believe you me - I get it.  

My son's dad (my ex of 16 yrs) diagnosed Feb/15 with Stage 4B Throat (inoperable) cancer spread to lymph nodes he finished his treatments in July and all dr's are doing now is monitoring him, that is it.  I moved in to help out and that's been quite the adjustment believe you me on all our parts.  but He is doing ok now it's been a tough go and he gets so cranky because he gets so pissed at his own body, his mental state (lack of better word) and we (his son & me) get he is sick and tired of being so sick and tired, he's beyond frustrated and it's tough to watch and nothing you can say or do period.  He's lost so much weight and his mental state of mind (very much lacking) not anywhere like it use to be, for sure.  His long term memory is there for sure but short term - nope not at all.  He started with another type of cancer in 2013 got it cut out and was in ICU for 4 months then and then released from hospital and they declared him cancer free but then this.  It was probably there when he had that cancer although they say one has nothing to do with the other - sucks big time.  he is 58 and only time will tell - not comforting to say the least but what can you do - absolutely nothing - that is the hardest part I think for us women (we're natural nurturer's.  We can just be there - that's it.

As for being exhausted and depressed - I know this from experience - I so do.  I've been sick for like 3 or 4 wks due to exhaustion (mentally, physically, emotionally) all of the above, I held it together since last February to February but the universe has a way of saying hey if you are not going to take care of yourself so you can then be there for others - we will ensure you do take the time for yourself first (being sick) - I have no choice but to rest and relax and think about me and only me for last few weeks - seriously.  Like I say the universe has a way of saying hey if you are not going to rest / relax we're going to make sure you do.  That is how I see it anyway....

Please take advise if it sits right with you only of course but ALLOW others to come in so you can have a couple of hours to yourself, nap, bath, to go for walk, read a book, go see a funny movie, have coffee/appies with some friends, whatever it is that can take your mind off things for a bit - you will have to FORCE yourself to do this - but it is only for your own good.  I haven't been well and I can NOT do for our son or his dad last few weeks even if I wanted too.  No way - I have to take care of me first so then I can get well again and then I can be there for them if need be.  I have learned it the hard way but exhaustion will catch up to you. 

As for your friends coming over  - SORRY but get over it , in this way you are just adding extra stress/strain to you - which you do not need.  As for household looking or being the way it is - so what - life is way too short.   They will understand and might even pitch in while they are their but only your own ego standing in your way.  Sorry to be tough just how I see it.  TALK / EXPLAIN to your friends I can't keep up with the housework lately so you are welcome to come over but my house is not up to MY own standards right now, I wish I could afford a housecleaner but you can't have it all.   YOU KNOW what will happen they will NOT care and might even pitch in and help out - allow it.  If they offer - allow be grateful and thankful and say YES that sound great.  - that is all you have to do.  ACCEPT help wherever it comes from meals being cooked, grass cutting whatever it may be - ALLOW it.

Sorry went on there - but little things to HELP YOU - do not add stress/strain to you but do things to take away any undue stress and strain your already going through a lot as it is.  Any little bit helps as you well know.

So please take everyone's kind and gently advice and do for youself too so then you can be there !00% not just 40% ok.  Sending powerful prayers and positive thoughts your way ok CarolK.

Take care you - (I'm learning the hard way lol cuz I'm sick still and feel stupid for putting me on ignore for too long). 
 
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Reply by KathCull_admin
25 Apr 2016, 5:18 PM

Have been thinking about you CarolK. I am sure your plate is full. I think the reality is that you will be tired - so much to do physically, emotionally and mentally. I remember thinking I would sleep 'when it was all over'. 

Take care - you are not alone.
Katherine
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Reply by CarolK
25 Apr 2016, 6:22 PM

Thank-you one and all for your advice and kind words! It's nice to have the support and to know that my feelings are "normal" for someone in my position. We have not made use of palliative care yet. In our province you must not be taking chemo therapy, have less then 6 months to live and the third requirement escapes me. My memory seems to be at a standstill lately.  I have a lot of errands to run this afternoon but I just felt that I had to say thatnk-you for the support!

Carol 
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Reply by CarolK
30 May 2016, 9:05 PM

I just thought that I'd let everyone know that my husband died May 1,2016. He just dropped to the ground and stopped breathing while trying to make it to the bathroom. I had asked him earlier if I could get him something so that he could relieve himself in our bed but Ken was Ken and he said no! He had stopped eating about two weeks prior to his passing but everyday I was at the store buying him things he thought that he could eat.

I didn't realize at first that he had passed on. I took me a bit to figure out that he wasn't breathing. He had the same episodes about 6 times where he would fall to the ground and begin this weird kind of breathing while he lost control of his bowels. Totally unconcious I guess. My husband never allowed me to go to the doctor with him. He said he had lost a lot of dignity due to his cancer and didn't want me to distract him other types of conversations regarding his life. I respected that. 

I saw that when 911 came that I wasn't performing CPR correctly and I was truly glad that they couldn't bring him back. Living as a vegetable was something that really bothered him so this was a blessing so to speak.

I know now that he is in no pain and that it's summer time for me (I get depressed during winter) and that I can sell our house while housing prices are good. All of this worked out in my favour but I would give anything and everything to have him back. The pain gets stronger while I grow weaker from fighting it.

I have started keeping busy. I walked six KM today and I have rented an apartment July 1 so I have to empty the house and move but I will do so on my own schedule. My neighbour's son is very interested in this place so I may just sell it to him as a favor. She has been good to me. My husband would be pushing me to get the most-opposite direction sigh....

My grief is stronger. I can no longer hide from it. My friends pull me out to do things but I don't get real pleasure. I guess this is temporary but I miss the old me which was really made up of two people. I have read that being creative helps. I hope that by communicating here that I can help meself.

Thank-you for listening. I know everyone has a story equally as compelling as mine. I read them and cry with you.

CarolK

 
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Reply by NatR
31 May 2016, 2:25 AM

Carol,
my sympathies to you as you grieve.
i admire your strength in starting into moving, selling, packing and doing it while the iron is hot.
it doesn't always wirk for everyone but just from your words I can tell you have made the decisions and you want to do what needs to be done.

again, my thoughts will be with you as you deal with so much so quickly, but don't regret or feel guilty that you didn't do enough....I believe you did your very best and now it is time for you to do the same for yourself 

please keep writing  as you feel the need to.
it does help to share and not feel alone.
often virtual strangers who understand a bit of what you are going through can be very helpful just by listening.  We are here ;) 

sending you strength Ánd thoughts
best wishes
Natr 💐 
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Reply by CarolK
31 May 2016, 2:35 AM

Thank-you NatR. Your words made me cry as so many things do but the support from this website is very helpful. You aare so right when you say that I am not alone and that strangers feel what I do. It helps me!
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Reply by NatR
31 May 2016, 2:49 AM

Thank you for replying Carol 
sorry you are feeling so very sad and I know you will cry at the drop of a hat - but yes this forum has real people who care and who have suffered loss like you and me

there are real personalities in every note
mark99 wrote you some very lovely insights into his experience
I am fortunate to be part of such a caring group and you are part of that group too

words from hearts are what happens here :)
hoping you are able to get some rest tonight Carol
sending hugs
NatR 💕 
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