Caring for my Daddio

[diamondlassy]

Hi everyone, reaching out as I am feeling utterly clueless. My 66 year old dad was diagnosed with heart failure in January. He also has moderate Alzheimer’s ( diagnosed feb 2021 had syptoms since he was 60) his mobility is quite affected and he can’t walk about much outside without getting completely exhausted. We are waiting on a wheelchair to help keep him out and about with his carer as we really are keen that he has a good quality of life even with his reduced mobility. So I guess my questions are; dad was given new water tablets to try and deal with a sudden swelling in his legs that caused a big blister that burst and now has an open sore, he wasn’t responding to the 3 mg dose so they upped this to 5mg( sorry I can’t remember the name it starts with a B) if the fluid keeps building up what will next course of treatment be? Will they try different tablets? How long do people with reduced mobility survive with heart failure? How quickly does it progress? Are there specific signs we should be looking out for? Many thanks

[Griff-64]

Bumetanide perhaps?Sounds like you're going to have your hands full, caring for him.

One problem that is on going but getting better slowly for me, caring for my OH is getting consultant's, doctors, nurses etc to talk to me, they tend to ignore me and speak to her, even though it's becoming more obvious her cognative functions are deteriorating because of MS, that's frustrating as her short term memory is non exsistant.

Diuretics, if your dad's aren't working, it sounds like his Dr needs to get on top of the situation, there are other choices, my OH takes Furosemide 40mg in the morning and Spironolactone 25mg lunch time, it took a little time to get it right.

But she doesn't often sit, chair or wheelchair, so her legs are elevated most of the time. If she does sit for any length of time, her feet swell.

As for your dad's wheelchair, the company that supply them on behalf of the NHS usually deliver within a couple of days of the item being ordered.

Good luck 👍

[diamondlassy in reply to Griff-64]

Yes bumetide that’s the one. Dad was on the highest does of flurosemide before this latest leg swelling episode. I’m going to be calling the consultant today. Yes definitely have my hands full with dad and three kids 8,5 and 2. It’s tough. That’s why I’m trying to get as informed as possible . I don’t know anything about heart failure and hve no idea about life expectancy etc . Dad also doesn’t elevate his legs as he forgets to.

[Griff-64 in reply to diamondlassy]

Oh, I thought I had it tough 🙂There are other diuretics too but it very much depends on the person, I can't use furosemide, they don't agree with me.

I dare say there will be others who respond that will answer all your concerns, for me, it was very much a case of learning on the job.

[Nettekin]

Hi diamondlassy. Sorry to hear you are struggling with your dad's diagnosis and Alzheimer's. My dad suffered from Alzheimer's and my mum from vascular dementia so I empathise with the practical and emotional problems this brings to a family. You also have your hands full with your children as well - be careful to give a little time to yourself , you cannot do everything. Accept all support offered.Have you considered contacting theHeart Helpline team on 0300 330 3311 Mon-Fri 9-5pm or email [e-mail].

Our members have always found them very helpful.

With best wishes x

[Hidden]

The first question is, are you or someone else his registered carer, or is your father still managing is own situation?

Next your father is obviously under the care of his GP and other health services. If you have any concerns about his medication, well-being and perhaps future situation you need to talk to the GP. If you are not his carer and you want to speak directly to the GP you will need to talk to the GP practice to allow you to talk to them about your father's medical situation. You may need your father's permission to do this.

Finally if your father has declining mental health issues it may be the time for you and the family to consider a Health Lasting Power of Attorney (or similar if not resident in England), if he still has the mental capability to sign over his care and well being to someone who can look after his best interests as his Attorney. Note a Health LPA is not the same as a Property and Financial LPA. There is plenty of information about these on the internet including gov.uk sites

[diamondlassy in reply to Hidden]

Thanks for the reply. My sister and I both have medical and financial power of attorney and I am his main carer along with a private carer. Have a meeting to discuss scans this afternoon do my sister and I can be more informed about what’s going on. Thankfully dad is blissfully unaware as he has next to no short term memory these days

[shopman]

If you want to know more about Heart Failure then the go to website is Pumping Mavellous pumpingmarvellous.org/ - unforttunately it sounds a lot worse than it actually is and is all to do with how functional your heart pumps blood around the body. When he was diagnosed did they tell him what his Ejection Fraction was - this is done in percentages and roughly anything above 50% is taken as normal.

As for the Furosemide you say he has been on the maximum dose & assume this to be over 240mg - if so has he had regular blood tests for kidney function to make sure the meds are causing no damage.