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Reply by Loving Wife

14 Feb 2016, 3:44 AM

Hi Katherine,

i looked back at all of the typos in my last message and see just how tired I was. And so discouraged! I was not able to get my husband into respite care after all, and I need it so much. I tried assisted living, but he really needs skilled nursing care. His bed sore is worse and that wound has to be cleaned and treated every day twice a day. Of course skilled care is much more expensive. My husband does not feel ready for hospice yet, so we do not receive regular respite care stays that hospice providers supply.

Tomorrow is Valentines Day, and I wonder how all of those grieving will bear up. Days like this really bring the feelings of loneliness home. You are all in my prayers. I approach each holiday and wonder if it will be our last together. I did the same last year and hear we are! My husband is stronger than he knows.

my best and heartfelt thanks,

LW

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Reply by KathCull_admin

19 Feb 2016, 6:35 PM

Dear Loving Wife
Cath1, another member started the thread When strangers become friends. I have copied and pasted a few of the lines from the thread – I am wondering if they can help in perhaps some small way ease that loneliness. I know it cannot eliminate it.

“I do find that being able to express my thoughts and feelings in a supportive and non-judgmental environment is extremely helpful (referring to these discussion forums) Sometimes we can say among “strangers” what is nearly impossible to share with those intimately involved in our lives. There is less pressure. Here in this online community we need not accommodate anything but the truth. For me, having a safe place to talk and listen to others about life from beginning to end allows me the chance to feel I am lightening the emotional burden of my feelings for those in my own inner circle of family and friends.”

JennJilks has also started the thread My husband has Stage II Prostate Cancer .

How did you and your husband spend Valentine’s Day? I ended up inviting my extended family for supper – and it was nice. My husband had always been the one who ‘cooked the beef’ and as I pondered what to make with tears coming down my face - decided to go for ribs instead. My sister wisely said, ‘maybe you shouldn’t cook beef anymore…’

Take care LW

Katherine

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Reply by KathCull_admin

23 Mar 2016, 5:04 PM

Hello everyone,

I wanted to let you know that a new member Anngee started the thread First time here and I thank you for having this forum this morning. Could I ask you, as you are able, to consider respoinding to her post?

Thanks for thinking about it.
Take care all
Katherine

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Reply by KathCull_admin

10 Aug 2016, 2:56 AM

Dear Loving Wife,
How have the last few months been?

Thinking of you this evening.
Katherine

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Reply by Loving Wife

10 Aug 2016, 3:58 AM

Hi Katherine,

We had a very hard Spring with a bad bedsore and surgery to repair it, but it is better. This is very hard and I get tired working and caring for my husband. He handles the paraplegia well mentally, but is not very self-sufficient. I have to do a lot for him when he is in his chair and everything when he is in bed. I stay exhausted.

But the cancer seems to be growing very slowly so that has not been a big issue recently. His treatments seem to be working and the pain is manageable with strong medicine. The lifestyle change is difficult. We can't go on vacation because he requires a hospital bed. That used to be something we both enjoyed.

Overall, we're learning a new way of life.

Thank you for checking on us. I hope you are well too.

Debbie

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Reply by Marymary

15 Aug 2016, 7:15 PM

Hi Debbie - just writing to say first off what a great job you are doing and yes it is so very hard, takes it toll for sure. It takes a strong woman in body soul mind and spirit to the work you are doing - it so does, not very many people have it in them to do so. It so sucks you both are going through this & I know you have a good day and then the next not so good, those little uplifting moments you think will carry you on through but then reality sneaks in and you are exhausted. I so get this, I do.

2nd - do you have help coming in to assist you? So you can have a few hours off during the day for your own health and well being. Ask the cancer agency, if you do not have someone coming in to help you out - you honestly can NOT do it all alone. I know he is your love but for your own health you do need help not that you are not capable just so you can keep on being strong and do what you need to do, if you do not you can become sick yourself, being exhausted all the time as you say is so not good for the body. It is NOT, I know that from experience, I was quite sick for almost 2 months (Mar/Apr this year & because I was the last one to be taken care of and I was just too frigin tired and worred / stressed etc. My son's dad has Inoperable Stage 4B throat cancer (Feb/15) whose my ex for 16 yrs but I now live there and take care of house, him and our son, we get along well so it's ok, he is ok right now but it's been a long haul so far. Waiting for scan re: throat right now because we found another hard lump on same side where his secondary cancer was (lymph nodes) and his thyroid is doing going from one extreme to another (understandably). Hypo to hyper quick every couple of months it changes, hard to keep up with that, for his own health have to constantly watch that, and probs with kidney but they won't even touch that but one day at a time. What can we deal with today is our motto now in this house. or you drive yourself crazy, let's just deal with today, not tommorow or next week just today, forget yesterday that is gone just today.

I know it's easier said than done but you must for your own health and welfare for if you do not take the time (breaks) you are no good to your love or anyone else for that matter, so my own experience you must make yourself drink enough water, eat properly, get outside for walks (exercise) some how some way, you need to take care of you first so you can be there 100% for your love. Whatever it is that allows you time just for you, gardening, walks, swimming at a leisure centre, coffee/movie with friends, dinner out and a long walk.

Not sure but have to mention - asking for outside help has no reflection on you or him it is there for a reason for your own sanity because it is a selfless job and you may want to do all on your own because he is your loved one and it is not someone else's job to take care of him but yours, but for your own health you need to ask and welcome in help from wherever that may come, whether it's someone dropping dinner off for you or watching over him for a few hours so you can go for a walk or a movie, go for coffee with friends, whatever it is you so need to do for yourself.

Please know I only say this from experience and I highly SUGGEST this for you as a care giver. I learned my lesson the hard way 2 months of being sick did NO one good, me, our son, or his dad. A small percentage not all but think it is their loved one and they have to do it all no one else should be taking care of them only them but there is help out there even a few hours a day for you to get out and fresh air etc.

I am sending some prayers up for you Debbie and your love. I so hope you take the time for youself I so do, I know you know nothing else right now but exhaustion which is why you so need to ask for assistance it is out there. Take care of your precious self ok. Big hugs to you

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Reply by KathCull_admin

13 Nov 2016, 12:55 AM

Marymary, wise words: "What can we deal with today...let's just deal with today, not tomorrow or next week just today, forget yesterday that is gone...just today.:

How was your today?

Katherine

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Reply by Marymary

13 Nov 2016, 1:36 AM

Ahh thank you so much for asking - it's busy crazy around this place for months now....so much going on - I can't even express in words....MAYBE it's because words that come out just make me want to cry, it's A LOT - want it just to be back the way it was -weird to say and I know you can't take back time or go back in time but I sure wish we could some times you know.

It's all catching up pretty much, my son has been having chest pains for 3 weeks now., we've been going to dr's and ER a lot and test after test., no work for him since Oct 26th & it's been stressful - I can not life about that. It's been a go for sure.

Thank god for caring friends - both of us received HEALING today (Reiki Masters) they all said you asked to do healing on your son but you NEEDED more than he did. LOL they all said you ahve to turn to your friends more Mary., turn to them, ask them- share - share - share.

But after dealing with HIS cancer (2 different ones) since 2013, I have NOT been talking to anyone about anything - NO SENSE -that is just how I have been feeling - OBVIOUSLY you all realized I have not been on - I kind have turned everything off - been concetrating on getting a job - which has NOT materialized (since MAY) very frustrating - I've lost so much - like I say I can't go there - it's so much...no money no nothing since May ....

Lost my car (couldn't make car payments)
Lost my storage unit - with ALL my personal things in
Lost my cell phone - well no service - couldn't pay
Could NOT get social services because I LIVE at my ex's and we're living together - even though we've been separated for 16 yrs... GOD HELP ME

My son's health I feel is catching up on him since 2013 to now and his chest pains are really bothering me - so today is ok - we both got healing.

As for his dad - he's hanging in there and no progress not better no worse., doctors, just say we will see you in 2 months., his body goes from 1 extreme to another., loses weight to gaining weight (thyroid)., he's on the verge of 180 lbs now., due to thyroid. he so has to watch his weight but will NOT listen to me - he wants to do what is right but his body says otherwise. He has a sweet tooth

For all of my bitching at him., he now hides cookies and chocolate bars and goodies (donuts., turnovers) and he doesn't think I know this - gosh

SO I am doing and holding my own and this is why I do NOT want to talk to anyone because it just feels like I am being negative and it does NOT help yes it's a form of release but at the same time - nothing really good to say - ONE day at a time yes

It's NOT all been doom and gloom but I just want good thing coming lol seriouslhy I so do - GOOD thing COMING IN - would LOVE it even for a little bit - see now I'm crying

Thank you for your concern and questions - I so do appreciate it I do - don't get on here often anymore cuz I really don't have much GOOD to say in regards to us....I know it helps well form of healing but I am so beyond everything at this point - MY SON"S HEALTH is so very important at this time - I'm praying - staying positive in regard to that I AM

He has a ECG scheduled, heart holster, and a stress test for this upcoming week and knowing what the heck is going on will relieve so much it will. I need to know he's going to be OK

HUGS TO YOU ALL - I will have more time after this week to respond in a more positive manner - ONE DAY AT A TIME - today is OK so far.

HUGS TO YOU ALL - try and stay positive and go with the flow and do the best you can this day and every day. I am (or I'd go crazy lol) thank you

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Reply by Marymary

08 Dec 2016, 7:09 PM

Hi - all - quick POSITIVE update. I have got a casual postion with fed. govt for 3 months and then have 2 other opportunities coming up in the NY with them too. So that is a great positive for me and I am so looking forward to having income.

We are awaiting results in regard to our son (Chest pains) and they are thinking it may be pleursy now but will have to wait and see.

Son's dad well not better and not worse, just monitoring him as the dr's say. He sees 4 dr's all are specialists except 1, and they have nothing more to really say to him, he is where he is and there will not be getting any better from here on out, best outcome is he remains where he is because only thing is he starts going downhill - that is it. So we go with that, that is what we monitor by. He is in denial a lot, he gets so frustrated, PO'd, and bitchy mostly with himself well his body. He has hurt himself while putting xmas lights up and wouldn't tell me because I didn't want him up there to begin with so he was so in denial and hurt his butt cheek and his right hand. They still both hurt after 2 weeks. He is in denial regarding his coughing too but so be it. We are both watching his sweet tooth, no more cans of coke or cookies or pasties, cakes and pies. We told him we do NOT want them or need them in the house period. He is up almost 190 due to his thyroid, which puts so much more pressure on his organs and his body period. But on one hand ya he's gaining weight (due to his HYPO thyroid) on the other hand his body can't handle weight anymore so? Ya it's been a ride so far.

We go day by day still and he is so cranky when he gets home from whatever he has to have something to do, so I purposely leave things for him to do, vacuam, clean up pots and pans in sink. If I don't then you just hear criping for an hour. I told him most people come home and want to just put their feet up and relax NO not him. Same thing with the morning he has to get up and start doing something right away, no grabbing a coffee and relaxing nope not him. Probably we are so opposites that is what drives me crazy, I like to relax with my coffee I like to take shoes off and grab a tea when I get home and put my feet up and just chill for a bit, polar opposites, you just gotta go with it you know.

So in NY it will all change, me working 5 days per week for 3 months will definitely change the whole entire household. I'm looking forward to it and the income will be great too, but getting back into a schedule will be hard after this many years, since 2012 wow. But I can and will do it.

Just a quick upday y'all - hope everyone is doing good, hopefully I will get on before xmas b ut in case I don't I would like to wish everyone a Merry Christmas, even though for some it is so difficult we all have to remember would our loved ones want us to be sad, we should take our pleasure / happy moments when we can. Christmas is a joyful occassion, where everyone is a little bit more joyful and pleasing. So I hope you all can take a little bit of joy from the season.

Take care

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Reply by KathCull_admin

07 Jan 2017, 4:18 PM

Hi
Marymary, I know it's been some time, but just wondering how your son's tests results were. Also wanted to congratulate you on your work positions. That must be a relief.

Like you said to though working full time will change life as you know it - I hope you still get the opportunity to put your feet up with a cup of tea!

Debbie, how was this Christmas season for you and your family?
Katherine

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