Just Wondering How Families Cope

az2wp0sye65487

My father suffers with rheumatoid arthritis as well as multiple myeloma. He's in his 70's. He's gotten progressively worse over the past couple of years and today my brother and I had to carry him to the car and take him to hospital.

On top of all of this he lost his hearing almost completely within the past few days. We now have to shout in his ear for him to hear us. We're looking into getting hearing aids for him.

I've never seen him this weak. Although he's been like this for some time, my mother and 1 of my brothers who still lives with them have always looked after him. I've never been exposed to how much he's suffering. He would never complain and always puts a brave face on it. He has always kept in high spirits throughout his illness and just accepted that its not going away. But how he's depressed and down about it - which is completely out of character.

I'm the 'baby' of the family and I've always been the one who depended on my parents and brothers. I was always looked after by them. Today really shocked and saddened me. I can't stop thinking about how helpless he must be feeling.

I'm ashamed to say that I couldn't wait to get out of the hospital after we brought my parents there. I was afraid I would break down in front of them.

It really upset me to see him like that. He was always a big, strong man - and I could see how upset he was too. How do carers and families of elderly / ill people cope? Do you find that even talking about it helps?

How do you stop yourself from breaking down in front of them? He needs me to be strong for him - physically and emotionally - but I'm on the verge of tears each time I see him now.

Mam of 4

Hi, my Mam also had rheumatoid arthritis,along with copd.Like your Dad,she never complained,just got on with it as best she could.

Until she lost nearly all mobility,then she did get down and I think she found it very hard to accept she couldn't do the things she wanted to do and was reliant on us to help dress,move her etc. But still she'd put on a brave face and smile and say things were good.

So hard not to cry in front of them, I used to go outside the hospital,have a cry, then say to myself;game face on now ,then go back in. Didn't want to make her upset by seeing me upset.

I found talking did help, shout at the sky if need be at times,let it out as you don't want it to eat you up inside.I know how hard it is to see someone you love so much looking weak and frail, but you will find the strength to deal with it,believe me if i did you will

don't know if I've helped but just wanted you to know that I've been there and can empathise with how you feel. Keep the chin up and stay going as best you can .

bowlofcherries

Hi Stevie,

I know what you mean. My mum had a severe stroke about 5 months ago. Lost her speech and the use of her right arm.
She's so strong and so positive but it is heartbreaking to see her like that. She's only 52, so young, so unfair.
I only broke down 3 times in front of her. The moment I saw her in the hospital bed. (I was abroad when I found out so only got to see her 24 hours later) The second time was when I first spoke to her doctors and heard the diagnosis. The third was when I had to return to work abroad and didnt want to leave her. Other than that, I broke down every day, just not in front of her.

What upsets me the most is that she has so much that she wants to say, but she can't. There is so much that she wants to do, but she can't do it without assistance. I'm sure its a similar situation for you and your dad.

It is so difficult to remain positive but I think, for me, its easier when I'm doing something productive to help. Like when my mum was in hospital for 10 weeks, I was there every single day. I was in the hospital from 10am until at least 2pm every day. I spoke to her doctors, I went with her to physio, speech and language and occupational therapy. When she came home, I made sure she went for a walk every day, I took her to the doctors and made sure she had her dinner on time. Its small things that help.

For me, and I know everyone has their own way of dealing with things, is to keep yourself busy by keeping your family member busy. It stops you from dwelling on the negatives and it can also stop them from feeling down for a short period of time.

You know your dad best, you know what used to make him happy and try to do that again, even if he needs your assistance.

The worst thing for me now is that I am over 2,500 kilometers from home and all I want to do is be there to help out. But if I come home, my mum would get upset as she would consider herself a burden.

As a final note, I would say talking helps, but there's no point preaching what I don't practice. Its hard to talk about how upset you are because it feels like you're showing weakness when you want to be the strong one. I haven't quite reached that stage yet but hopefully you will find it easier. And if you don't, talk to boards. There are other places which are good ways of expressing your feelings without being judged. I'm not sure if I can post them here but I can pm you with them if you like. It might not be for you.. but it might help.

az2wp0sye65487

Thanks for your replies. It's good to know that others have gone through similar situations and that there is light at the end of the tunnel.

My da's still in hospital. On the plus side his hearing has come back about 60 - 70% so we can have a conversation with him now. He had (still has) an infection in his arthritis which seemed to effect his whole body - and it was also most likely what was causing the hearing loss. As the infection has been treated his hearing has been improving.

He had an operation and is still recovering - but hopefully he'll be home for Christmas. I don't get up to see him every day - maybe 3 times a week.

I feel bad for not getting to see him more - but with work and other commitments it's tough. He always tells you not to waste your time coming to see him. I'm not sure whether it's that he'd prefer not to be seen there, or if he's genuinely concerned about us missing out on something else in order to visit him!

Anyway - just thought I'd update you and say thanks again for the replies. I'm feeling a lot better now compared to when I started the thread. It's mostly due to seeing the improvement in his health over the last couple of weeks.

bowlofcherries

Thanks for the update stevie, glad your dad is improving!

I think, and its only my opinion, that if a family member is in hospital, they want to see you and spend time with you but they don't want to hold you back from doing things you would normally do. Especially parents!

Hope the improvements continue and that you'll have your dad home for Christmas. Don't feel guilty about only getting to see him 3 times a week, I'm sure he appreciates the time you spend with him and wants you to continue living your life too.

Take Care!