anyone dealt with a parent's prolonged illness? because I'm having difficulty coping

[ultrawildcat]

I hope this is the right place to put this, if not, mods, forgive me as I'm worried and maybe not thinking completely clearly. If anyone has any advice, kind words, etc, I sure would appreciate it, as I'm having a difficult time coping

[Gls50ful]

Yes I've been through that, 24/7, a very difficult time and I know what your going through and wish you all the best. My parents problems completely took over my life and wrecked it. I felt as if I was getting very little help or assistance. I found that the so called care system (social Services / NHS) proved to be 'tick box' and costs orientated. They leaned very heavy on me to take responsibility for a terminally ill parent when clearly it was damaging my life and familly.
I offer the following
1) Get good advice ( your own doctor, Help the aged, Citizens advice etc...)
2) Keep notes when dealing with doctors or medical profession. I.e. Names, dates, phone numbers, position held and decisions made.
3) Make a list of the medication even if you don't understand it and keep notes of any changes made.
4) Be prepared for considerable emotional bullying from a) your parent and b) NHS / Social services when they want you to take Parent out of the system, or do anything they claim they cannot do due to lack of resources etc..

5) Most important ... Defend your time. Do not feel guilty for taking the phone off the hook for a couple of hours or just getting out and living your life for an evening or weekend. Get tough when you need to, stay resillient to the emotional bullying and be very very kind to yourself.

Hope this helps, Good luck friend, it seems bleak but you will get through it. Remember to look after yourself.

[Greenman]

I looked after and became a carer to my Grandfather(I know it isn't a parent) but he didn't trust outsiders so decided to 'employ' me on a daily basis-he was my boss as it were. I looked after him for three and half years and then we got carers in at night to keep an eye on him and I would look after him during the day up to 4pm. I enjoyed it a lot, keeping him trim by shaving him, making copious cups of tea and on a warm day sitting out on the balcony of his flat with a nice glass of wine, whilst he had his favourite drink, a gin and tonic and sat on chairs watching the world go by.
In the afternoons he would have a sleep whilst I got on with some work on my laptop. He would also pick horses he liked and if necessary I would walk the fair distance to the betting shop OR get some groceries from a nearby precinct of shops.

The worst day of my life(at that time) came when one afternoon he hadn't felt too good, the carer wasn't there yet and I had been watching Just Good Friends on the tv. I will never forget the panic I felt when I went into check on him and he lay very still. I phoned the agency and they said phone for an ambulance which I did. They suggested doing mouth-to-mouth but I couldn't get a pulse. The ambulance crew arrived minutes later and still tried to revive him. The carer arrived and we got in the ambulance and sped off to hospital. We waited for a few minutes but it seemed like hours and then I heard the worst. Breaking to his daughter(my mother) over the phone via my Dad was just awful.

What I will say was that I will always be grateful to him for employing me and getting me out of a rut but the thing is NEVER panic and always ask for help if you need it. Also you deserve some ME time. If you are being bullied just walk away, go into another room and punch a cushion or something-remember your Parent can't help the way they are but never be afraid to ask for help. I wish you all the very best.

[sweatyhat]

My father was injured six years ago and now has limited mobility.
Mam does her best to cope but some things only I can do. That doesn't mean I should do everything in that category, that's what tradesmen are for. Don't ask me, get someone in.
That may sound harsh but Gls50ful makes a very important point about having your own time. Sometimes you must say no for your own sake. You will initially feel guilty but after a while you'll stop recieving some of the more outrageous requests for help. I used to dread visiting my parents because they'd expect me to work through a list of things to to do, I'd arrive home late and it was causing domestic problems. Nowadays, after using the word 'no' once in a while, I look forward to seeing them once more.

I realise your situation is different to mine, but you're welcome to PM me if it helps.

Kind regards

sweaty

[krustymcc]

I found myself in this situation for several years and my heart goes out to anyone experiencing it.

There's no point trying to sugar the pill, it's the hardest thing I've ever been through and there were times that I felt genuine despair. Having said that, there were rewarding moments in there as well, and I think that getting through it has been my most significant achievement.

Gls50ful gave an excellent response and I think you would do well to follow his advice, but I would like to join him in stressing the importance of point 5.

You are not superhuman and you will need to look after your own well being throughout this experience.

Make time for yourself, fight off any feelings of guilt that may occur over this.

Seek out and use any kind of respite care that is available and don't allow yourself to be emotionally blackmailed into neglecting your own needs.

You are already demonstrating your strength of commitment by taking this on, and you are much better able to look after your parent if you look after yourself as well.

I wish you the very best of luck.

[otiscleotus]

For close to the last couple of years I've been trying to help with my brother that's a couple years older as he succumbs to ALS (aka Lou Gehrig's disease). While his wife is doing most of the care for him (and now that he's on hospice added care givers) I've been doing a lot of their house maintenance and whatever else little things I can. At the same time I'm watching over my 80+ year old mom and her house to keep her independent as can be although my brother's illness is taking a lot out of her too.

I haven't had the problem of being emotionally blackmailed for my time but I don't know if that can be done to me to begin with. It doesn't really matter as I'm not doing anything else now and wont have anything else to do until I win my own disability claim with the Veteran's administration. My major concern is that I'm able to stay functional enough to help both of them while they're still here.

And what I meant to add and just now remembered is to respect their wishes and don't try to push them into activities no matter how low key that they don't want to do or are otherwise not interested in.

What I'm not looking forward to is after either of their passing are my siblings and other relatives and friends showing up after staying as far away from all this as possible with their "what am I going to get" attitude.

[Warren G]

I'm sorry to hear that, ultra. I know it's really tough on a person to deal with this. Back in the 80's I had to take care of my mother, and do things that a son should never have to do for his mother. It was hard on me, but it was hard on her, too. She didn't want to be in that predicament.

There's been a lot of good advice here, and I agree with it, but in the end, all I can say is....that's the way it goes. That's life, and someday you may find yourself in the same situation. And you can only hope you'll have someone to help you like your parent is being helped now. There's really no choice. Bear it like a man. Do what you have to do. This is what love is all about. It's not just a word, or a thought. It's action. It's the kind of action you're showing now. I'm sure your parents sacrificed for you, now it's your turn. You can do it. You have to do it. Hang in there. You and your parent will be better off by it. You will both be in my prayers.

[ultrawildcat]

thank you all very much, sometimes just venting the frustration, and getting a sympathetic response, is very helpful, and i thank you all for listening

i hope you'll all forgive me for not going into further details, for reasons of privacy

[Ace]

Originally Posted by ultrawildcat

I hope this is the right place to put this, if not, mods, forgive me as I'm worried and maybe not thinking completely clearly. If anyone has any advice, kind words, etc, I sure would appreciate it, as I'm having a difficult time coping

I care for a parent with cancer.
The best advice I can give is don't feel guilty about taking time off for yourself. Take care of yourself too; you're not a bad person if you're not thinking about it constantly.

It's difficult, but it's an opportunity to find strength within yourself

[ultrawildcat]

Originally Posted by Ace Bailey

I care for a parent with cancer.
The best advice I can give is don't feel guilty about taking time off for yourself. Take care of yourself too; you're not a bad person if you're not thinking about it constantly.

It's difficult, but it's an opportunity to find strength within yourself

I know what you're saying, just didn't expect to have to go through it twice in a single lifetime,,,already did this when I was 16 and caring for my grandmother after school when the nurse would leave and I'd relieve her ...cleaning soiled bedsheets because your grandmother has lost control of her bowels due to advanced cancer is not something i would wish on anyone, esp. at that age