Supporting a family member: Hello, My... - British Heart Fou...

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Supporting a family member

Kezza80 profile image
11 Replies

Hello, My first go at this. I've joined to see how families support someone with HF? Just before xmas, Dad had a Stemi and 2 stents fitted immediately although now has heart failure. He's getting better but I'm a nervous wreck all of the time. I've just got over 6 years of mam having heart attacks and a double heart bypass in the summer. I'm trying to stay positive for dad and talk things through when he wants too. How do you cope with the anxiety waiting for the phone to say he unwell again? Thanks for reading ❤

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Kezza80 profile image
Kezza80
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11 Replies
Kristin1812 profile image
Kristin1812Heart Star

Your post reminded me that family are so worried about us! We are going through all the investigations and treatment and worry......but of course they are, too. You were. a very good reminder of the burden on them, too. Thank you.I think just being present, helping out, and being concerned and available to ‘talk things through when he wants too’ are wonderful. We do get bleak moments, so can be a bit wearing

I loved it when my daughter got me out of the house by driving me to my favourite spot, and made me walk a few steps to enjoy a take away coffee! My first outing for weeks!

stillaboveground profile image
stillaboveground

Hi Kezza80, I was on holiday in Spain when I had my heart attack in May 2019, my son and his wife flew out to be with me and my husband (no pandemic then). We old ones looked after our family when they where small and still feel we should be still making sure they are okay now they are grown up, but I was so glad for the visit in Spain and the care he still gives me and my husband. Support your parents and be there for them, I know you want to take care without smothering them. Just be there. I hope he is feeling better soon. Love to you and your parents. Take care Ruth xx

Kezza80 profile image
Kezza80 in reply to stillaboveground

Thank you Ruth and pleased you're feeling better. That would have been scary in another country...I would have flown out too. Take care x

stillaboveground profile image
stillaboveground in reply to Kezza80

Hi I was in hospital in Spain for 3 weeks and I have to say the treatment I got there was amazing, apart from the food that was disgusting, but I lived to tell the tale as my site name says I am still above ground. I am now mended and don't need any more treatment so far. I send my best wishes to you and your parents.Ruth xx

Kristin1812 profile image
Kristin1812Heart Star

Yes, it’s particularly hard in these conditions, isn’t it? So good you are just next door.

You say you have to stop your Dad doing too much. Is that a bit about your own anxiety?

Just a quick note.......my journey is now going very well, after lots of heart issues and treatment etc, so there is a good life to be had after heart events.

Keep in touch.

Kezza80 profile image
Kezza80 in reply to Kristin1812

Hello, Dad was always on the go pre HA. For now, his nurse said he can't have his heart rate above 78 bpm... to help his heart recover. He wants to go walking albeit at a slower pace but it's putting his heart rate too high.

It is most likely my own anxiety too; am a worrier! I joined tbis geoup to help me understand the journey fromme dad's side to ease my anxieties. It's a fab group! X

Kristin1812 profile image
Kristin1812Heart Star in reply to Kezza80

Hi again. You sound like you’ve really thought this through. Is he just going a bit too fast for the advice you’ve been given?What usually works with him?

Does he use a Fitbit....I really like it to control my HR better when I’m exercising.

Kezza80 profile image
Kezza80 in reply to Kristin1812

He is using a fit bit to map his heart rate. I suppose as it's early days and he's finding out what he can and can't do for the moment. I think because he feels ok he can do it and he's worried it will always be like this. We won't know until his next echo at end of March the extent of his heart damage. He doesnt take a telling off well!! So we have small chats. He is now checking his fit bit app to see how his HR was doing a particular task. Im gonna mention this group so he can find out info from people actually going through it and not from good old Google.

Sunnie2day profile image
Sunnie2day

Hiya, Kezza80, welcome to the group!

I went through what you're going through - my dad had chronic obstructive pulmonary disease and congestive heart failure. I was one of a team of three (my brother, a paid carer, and me) caring for him. Someone was with him 24 hours a day seven days a week, for companionship and helping with things he could no longer do.

I did most of the cooking and meals serving, my brother did the heavy lifting like daily vacuuming, and the paid carer came in overnight to help Dad shower safely and in case something happened during the night.

What helped my brother and me the most was two-fold, one being the understanding his condition and medications could make him 'tetchy' to be around, and two making it our goal to know everything we possibly could about his conditions. We read everything credible we could get our hands on including medication package inserts, we talked to the experts, and we asked Dad to make it possible for us to be included in appointments with his medics. His doctors were so happy to see us taking a strong commitment to helping Dad that they gave us their contact details so we could ask any questions or inform of any concerns.

Shortness of breath was the worst for Dad and he could become frustrated (aka grumpy, tetchy) if a situation meant he might need to use more breath and energy to get a need or something else across - understanding that, and knowing (thanks to our reading) his meds might exacerbate the tetchiness made it easier to not have our feelings hurt when he seemed a bit unreasonable. But it also was a help gauging how he was doing - the more grumpy he was, the more we knew he was struggling to get air. He was on prednisone and could seem a little confused at times and we took that as a sign we needed to contact his consultants. We wouldn't have known those things without all the reading and being able to ask his medics questions.

We also made sure to take care of ourselves (biggest reason for the team approach). At the time (mid-1980s) there wasn't a lot of writing aimed at 'caring for the carers', there is now and it is a very important part of being the best help you can be. It wasn't easy taking time for ourselves (which we did in turns once Dad's conditions progressed and he needed 24/7 care) but it certainly was helpful and we could come back refreshed, recharged, and ready to help.

Please keep us updated on you and your family.

Sunnie2day profile image
Sunnie2day

For his next appointment, see if he can take a tape recorder in with him - or ask if he can use his mobile to telephone you from the consultant's exam room and have him/her on speaker.

If future appointments are done as video or telephone (mine and many others of us have been on 'virtual' consults during the pandemic), see if the consultant is ok with having it on speaker.

It must be a relief to know he is showing improvement - onwards and upwards!

blacklabs profile image
blacklabs

Just seen your post. Long delay sorry. I as a parent always tried to be a regular mum not show stress towards my daughter. Teenage years difficult right when she was to have her first op which is understandable. At the time my anxiety was through the roof so many other family issues but I tried to ignore my own needs. Looking back it was a normal daughter and mum relationship. Years later as she got older and more ill I felt guilt that we had arguments it took its toll on me. I shouldn't have done this said that what if I made her ill. I have needed counselling so has she. Both of us were mixed up. I think family members should have counselling for anxiety when you are dealing with illness such as the heart. I am ill now with thyroid probably through stress and worry. You see I blocked it all out . I did the same with my husband ill on life support so desperate to get on with it life but it has taken its toll.

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