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Reply by NatR
11 Mar 2014, 5:41 PM

Hello Xenia,

I am so sorry that your husband is having more pain and discomfort.  However I am so pleased for you both, that you have a doctor who is so giving of his time, so receptive to you and so kind....what a wonderful doctor.

tax time is stressful for us all....would it help to take it to someone...rather than do it yourself..  There are many accountants who will do it for a flat fee...and they are up on all the ins and outs and changes:)   Maybe that's what you meant....that you are doing....good luck,!

its a rough time of year, still winters weather in northern Ontario...I would love to see anything growing out of the ground....glad you are having that first glimpse of flowers in spring!! 

Hope ped tomorrow your respite time gives you the break you need.

making meals in advance is a great idea.... You are doing a good job.....
sending you  a hug,
Natr :)  
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Reply by jaindough
23 Jul 2014, 3:36 PM

Hi Xenia,

I just wanted to write a note in your thread to let you know I am thinking of you. Strength to you, friend. I hope all is as well as can be with you and your husband.

jenn 
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Reply by Xenia
11 Aug 2014, 4:51 PM

Good Morning All:

It has been a while since I have been on line.  John is having a harder time with his breathing etc.  Of course, he tells tales, no I am okay but his breathing has to be taken care of with his nebulizer, his nitro, morphone pills, etc.  Then, I am feeling better.

I have been a bit worn out.  Waiting for the heat to go down, it has been so hot here in B.C. that this alone is wearing on one.  Luckily we have a portable air conditioner which we put in the sliding doors, with fans, etc.  Lock all the windows, close the drapes and put in days waiting for a reprieve with cooler weather.  Don't really want any rain with this heat s the humidity is terrible.

Had family over yesterday, 2 daughters and son.  Visiting John and talking with him.  Helps him to pass the days.  Nurses will be coming to-morrow, to-day is his bath day so I am not doing much.  Washed clothes and waiting for the care aide to do his bed, change all the sheets and pillow cases as he prespires so much.  My arthritis in my hands is painful to-day so I can;t pull off the sheets, most times I do that.  

I keep thinking of what to do for John, he replies, nothing just let me be.  He doesn;t talk much and I let him be.  He is eating less so meals are minimal.  Life goes on at a slower pace and days seem longer.  Thankfully I will have Wednesday off for 4 hours and go out with daughter.

Not much else going on and I hate to feel sorry for myself so to all trust your day is going well.  Keep in touch.

Xenia 
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Reply by marstin
11 Aug 2014, 5:20 PM

Hi Xenia,

This heat has been a blessing and a curse for many I think. Having recently found out that I have COPD, I can sympathize with others who suffer from it. The air the past while has been quite stifling (yesterday in particular) so I can well imagine that it is playing havoc with John's breathing and even his interest in eating. I'm hoping that we do get the forecasted bit of rain on Wednesday to cool things down a bit.

It's good that you have help at hand to do some of the more difficult chores. Changing sheets is hard at the best of times with mattresses being so heavy.

I guess as long as John is comfortable, there isn't much you can do for him. That will be nice for you to take a break on Wednesday with your daughter. Just a few hours away makes a difference in your state of mind. I used to find that just going somewhere for lunch helped me regain a bit of strength to keep doing all that is involved in caregiving. It is an all consuming role.

It's good to know that you are feeling a bit better except for that darned arthritis. That must be quite painful.

Don't feel bad about feeling sorry for yourself. I think we all have those times and it's perfectly fine. It's pretty tough to be upbeat all of the times under the circumstances.

Hugs,
Tracie
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Reply by NatR
12 Aug 2014, 2:16 AM

Hello Xenia (and hi Tracie and other members)

Xenia I can understand your feelings - trying to be busy, trying to help your husband and meet his needs. Trying to make sure everything falls into place for the caregivers who come in to make your load a bit lighter:)  

then there's the heat!!
i totally understand how draining it is especially when we get older - it does suck the energy out of a person.

i admire your ability to caregive, support, write to the forum group and also take care of yourself.
as a caregiver in nursing homes for many years  - I now look back on what I once accomplished - and then I look at how I have slowed down a few years later.

you are an amazing wife mother and caregiver
we are so hard on ourselves 
have a good night, sending you a hug from an equaliy warm ontario:)
NatR ;) 
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Reply by Xenia
12 Aug 2014, 3:29 PM

Good Morning All:

Thanks for your support and kind wishes.

 Last nite was terrible.  It was so hot and humid that it was impossible to sleep, so what do I do, lay on the chesterfiedl (or do we call it a sofa - who knows our language anymore) turned on the air and fan to put some air movement in the condo.

John had a bad day again.  After he has a bit to eat he can't breath so on with the nebulizer, nitro and morphone.  Helps him but he is getting very restless.  He used to like to sit in his chair and listen to the radio, watch some TV but now goes to bed.  He feels more comfortable there, of course that makes the time go so slowly.  I had to put a rotating fan at the door way to the bedroom as he doesn't like the feel of the breeze on his arms.  Even though it is hot he has to have a sheet covering his arms and legs.  Other than that he remains the same stoic man who asks for little and complains not at all other than he said he wanted to get to heaven.  He is not a very religous man but he does have his spiritual side since he had the near death episode years ago.  Since then he says he is afraid of nothing and welcomes passing.  Of course, that makes me sad.

Can you tell me if any of you have just had tears run down your cheeks even though you are doing some housework or just reading.  I find this happening more often now.  I am not a crier but somehow the tears want to come on their own.  

Today the family from Vancouver is coming over with dinner.  It is our youngest daughters 50th birthday and she, her husband and our grandson are coming over.  The other daughter living here will be here for dinner with husband.  It is always great to have them over.  Lifts John's spirits.

It has begun to drizzle a little, hope it really rains and clears up the humidity.  It is supposed to cool off and that would be a relief.  The roofers have been working since 7:00 a.m. and hopefully they will finish off soon.  We have been fortunate to have a good condo and not need many repairs so this little inconvenience is easy to take.

I have been trying to read but keep going back to what I have read and find I just skim books now when I was and am usually an avid reader.  Just too much going on in my mind.  

Just put in a load of washing and put on the dishwasher, try to get this done before it gets too hot, perhaps to-day will not be too hot or humid so off I go to do some chores and keep myself busy for the morning and rest this afternoon as I had a few naps all nite long .

Take care and thanks for the support

Xenia 
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Reply by NatR
12 Aug 2014, 5:27 PM

Dear Xenia,

my heart goes  out to you - you are such a good wife mother and caregiver.

as a personal comment - I feel that your caregiving is taking it's toll on you - it has been your life's work for quite a while and you are maybe starting to feel the "burnout" that comes with the day in and day out - never knowing what comes next.

i don't know what to suggest to ease your burden - as you have a love and commitment to your husband - and I know you will care always - but maybe somehow you can take some extra time away - from home.

whens the last time you actually were away overnight?  A long time right?

you need a mini vacation - and don't feel guilty about it.  We are only human and we have our limits.

sending you some energy with this note and a hug with it.
i hope you have a good visit with your children - and I hope the heat lifts soon.
we finally have rain and cold winds after many days of heat and humidity 

sending my thoughts,
NatR :) 

 
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Reply by jorola
13 Aug 2014, 3:23 AM

Dear dear Xenia,

I am so sorry this has been so hard on you and John. You are working so hard to keep John comfortable and he is trying so hard no to be a bother.

I understand about tears coming from nowhere and not being able to stop them once they start. I still have a hard time focusing at work and especially on things i once enjoyed.

Do you still have the respite? Can you get it for overnight once or twice a week so you can get a good slepp but still be near should John take a turn for the worse? What about one of the girls staying overnight to let you sleep? When the girls come over over do you let them fuss about or are you trying to entertain?

I just really hope you can get some rest. Hard in this heat I know. So hot here in AB too - very unusual for here to have 29+ degrees for two weeks in a row.

Thinking of you and John and sending hugs and strength your way.

Jodie
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