Beryl
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Beryl, August 15,  2020  11:39am EST

I have HF PH arthritis do not have a caregiver, my S/O helps with like getting Rx meds, the weekly shop etc.

I am in one of the EU countries. I do not have a caregiver. I do my own housekeeping but go slow and is short chores. I still cook daily except like this past week. Here in EU we had heatwave 35C/95F indoors gets to 29.5 no A/C. I do have ventilator and aircooler. My S/O gets my RX meds once every 3 months and he goes grocery shopping once a week. He drives me to the few medical appointments. I get time-outs and used to go into pre-syncope so I myself decided is not safe to drive.

He has own small business but very busy with job. He had spinning as sports for his de-stress. I do not burden him but try to be an independent HF patient. My GP was like exasperated I get left alone evenings in my condition.

I am allthough quite ill very much into doing things hobby pass the day. I had to give up gardening and later the patio pots gardening.

I try to keep fresh water bowls for visiting cats, birds etc. I have like 0 social circle.Few family is demised since years.One overseas american best friend. Some forum contacts at other forums of my hobbies.

I am older mom, my DD grow up with an ill mom. My GP told me not to let her be caregiver as that messes up childhood. But I was allready with that in my mind of not letting her.She has to live her own life. A small thing like get me some item few times she went shopping. No chores. High school here in EU is extremely much homework and stressed out kids studying at all times.

Her dad did the outdoors things with DD, he has no interest in shopping just the needed things.When I could not travel anymore they went travels together. He travel alone vacation. My DD moved to USA for her college study and with Corona and no travel do not see her since Christmas early january this year, then she travel back.She is very private about her things.

So far I have not needed a caregiver. Sometimes I think what if I do but he is not the type.I read a lot about other caregivers.

And yes I know ill patients do travel with family, he does not have the patience for that. He files my tax as I have brain fog.

I say about travelling with special holidays tours for the ill infirm he says I can not even walk to mailbox.

I am on more forums. I am forever in search of someone who is like my situation.

My cognitive fails a bit, sometimes forget meds, take them later but then have to skip evening dosage as is too near to it.

I watch my nutrition. Lost my appetite from HF. Have lots of digestive issues from side effects meds. Lost muscle.Arthritis allover and  not allowed any Ibuprofen with my meds.

With the Corona things are even more scary now, for us the patients.

Tried to make my text not too long.Two days ago had cardiology and CRT pacemaker check up and bloodwork. Have to go back for Echocardiogram in 3 weeks, was no earlier appts available all times were full.

I have blurry vision from cardiac meds hence the spaces in text.

Everyone have a nice weekend.

3 Replies
  • Beryl
    Beryl, August 15,  2020  4:11pm EST

    It is saturday evening and I am thinking where did time go.

  • AHAASAKatie
    AHAASAKatie, August 17,  2020  3:06pm EST

    Thank you so much for sharing this with us! Please know that we are here for you. Best Katie

  • je199
    je199, August 26,  2020  11:17am EST

    Hi Katie,

    You must be very frustrated with everything going on. This is entirely normal. It is easy to feel alone going through this. If you need someone to chat with I am always here for you.

    Best,

    Jennifer

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