Coping

[Beaches1998]

Hi can I ask how you all cope if working full time and being a carer ? I am exhausted and watching my husband suffer from this terrible disease is heartbreaking

[Derkie54]

Hello Beaches,

I feel for you as I was in the same position.

I juggled working and caring as long as I could but eventually I had to retire early as my wife was falling and generally not coping on her own.

She cannot do anything now and needs help with everything which can be very tiring. I think you'll know when you can't juggle any longer.

Now for us it's a case of doing what we can do and leaving what we can't do.

This might not be much help to you but we've, like everyone else had to adapt to the changes as they come.

Take care, I'm sure many on the forum understand your position and wish you well, hopefully you can adjust as best as you can when you are faced with your changes and new normals.

[TK-67]

do you have any help? It’s really important to make sure you have support - both practically and emotionally. We found our local hospice was there for all of us. It’s always a scary word but they supported us and mum. They even helped unlock benefits and provided counselling.

[SamfMSA Moderator Staff]

Hi there

I'm the Social Welfare Specialist for the MSA Trust and I'd be happy to offer some practical advice and support around benefits as well as help for carers. If you'd like to have a chat please drop me an email - [e-mail]

Kind regards

Sam Fitzgerald

[Beaches1998 in reply to SamfMSA]

thank you , any help and support would be greatly appreciated

[leroybrown]

I'm also the main carer for my wife. My wife can no longer do almost anything for herself and requires assistance with almost everything. She is wheelchair bound for past 12 months, Foley Catheter, and speech is getting more & more difficult for her. I'm self employed and work from a small unit beside our house, but it would not be possible for me to work from outside the home, as being a carer is now full time.

We are lucky in some respects in that my wife does have personal assistant for 16 hours per week, we have good friends that help and hospice have now come onboard as well.

Having said all that, my wife if proud woman and will only allow myself to look after the more intimate care such as toileting, getting dressed, showered etc.

[diyducky]

Hi,

Working full time and caring for your husband, no wonder you are exhausted. I only work part time, four mornings a week and I have help with the caring from one of my sons but I am also feeling exhausted.

I would love to give up work and just look after my husband but don't think we can afford for me to do that. My boss has said I can work from home if needed but I'm not keen as I like to keep work and home very separate.

I don't have any advice for you but I am sending you tonnes of love. From one exhausted wife to another. x

[Beaches1998 in reply to diyducky]

Thank you

[CanAmK]

So, my husband passed away in January at age 53. Looking back now, I am not sure how I did it but I carried our insurance and obviously he needed good insurance and he did not want me to stop working. Last November I broached reducing to 3 days for a short period of time to allow for my caring time at home. It seemed like once I was exhausted, I never could get the energy back. I did not reduce my hours at all. I think it is hard to recognize when we are having a tough time because we just do what we have to right? I got up everyday because I had to and some days I literally said "put your feet on the floor, now stand up, now get ready for work (which often meant not bathing 😜for days), put one foot in front of each other. I found in this group that many found themselves in similar situations without people who are able to help and significant others who only want the primers carer's help. This too was out case. I look back now and am grateful that I never had to hire help for bathing, dressing, catheter care, etc BUT I am an Occupational Therapist so I am trained to do those things. If you are able to have professional support, I would highly recommend therapy and nursing services so they can help during the day while you are at work especially with bathing and toileting care. It will allow for you to spend more time together not focused on basic care. I am just letting you know how I coped. You are welcome to ask me anything. I find everyone on this page as very helpful and empathetic and willing to share the most intimate concerns because we are all going through this or have gone through this. I wish rest for you.