Personal Stories

Palliative care improves the quality of life of people with a range of advanced chronic illnesses.

Helen’s story I think I get a lot of support. When my mother was ill, she went to Fernlea House, a palliative care day respite service. They’re very patient, and so caring, and I know how well they looked after my mum. It’s just a beautiful place to go and I look forward to my visits.

I didn’t really know what was going on with me for a while. Getting lost can be scary, but now I just go with the flow. I think it’s hard for John. I just feel that home is where I want to be.

Helen was diagnosed with Alzheimer’s Dementia when she was 57. She is cared for at home by her husband John. Helen wishes to stay at home and

support from a range of services helps to make this possible.

John’s story

Prior to Helen’s diagnosis there were changes in her capacity and behavior that suggested that something was wrong. Following the diagnosis, we needed to make both mental and practical adjustments.

I think palliative care must attract the sort of people with endless patience, because the staff at Fernlea House are absolutely magnificent. They’ve found that right balance

“Animals give me joy. My little dog sits there patiently waiting for a pat. He always seems to be cheerful.”

“..home is where I want to be…”

between assistance and not being intrusive, and allow Helen to make decisions about things as they progress. Helen had a work associate and volunteer at Fernlea who died of cancer recently. The palliative care team was involved early enough to put in place her wishes for her final days, and for her funeral. It must be something in the character of the people involved. Knowing that Helen is really well looked after there is really important to me.

On Mondays Helen goes to a council run activity centre. Two days a week she is picked up by a volunteer and spends the day at Fernlea House. On Thursdays a carer comes here and gets Helen up and dressed. They watch videos, go for walks, and sometimes go shopping. Whilst Helen’s reasonably articulate, she can’t do anything for herself. She sometimes gets lost in the house. She can’t find her clothes or dress herself, and can’t find anything in the kitchen anymore, so she needs that assistance. She’s totally aware of what she can’t do, but she seems to be accepting of her illness.

We both like it here. Even though the place is not pristine and the horse is doing the mowing for us, Helen likes having the animals around and the dog makes her happy. We’ve tried to find Helen longer-term respite. It’s something we need to persevere with, but at the moment it just doesn’t work for Helen.

I’ve got to a point of acceptance, but on the way there have been emotional hurdles. It’s going to be a progressive thing. When we arrived here over thirty years ago, I did the fencing and Helen did all the planting. We’ll often sit out on the verandah, which is really restful. We have decided that Helen will stay at home for as long as possible. To enable this, we’ll increase the in-house services to assist Helen. We couldn’t do it without them.

“ … allow Helen to make decisions about things. “

Making each day a happy one is Margaret’s goal as she cares for her husband Pat, who has end stage kidney failure. Supportive neighbours, the Men’s Shed

and South Gippsland Palliative Care help to make that possible.

Making each day a happy one

Pat’s story

I have kidney failure, diabetes and can’t see much at all. The only good thing I’ve got is Marg.

The palliative care is just A1, for me and for Marg. And I think my friends now have a better idea of what palliative care tries to do. A lot of people used to think palliative care was only for when you’re on your way out of this world. I’d describe it as most helpful and supportive. And they seem to have the right people in the right place.

I get really depressed but they look after me and they boost me every time they come along. The nurses help me with everything they can. The palliative care volunteers offer to read the paper, they get me cups of tea; just company really. They get me out of this depression and I know they help Marg too. We couldn’t do it without palliative care now.

“ We couldn’t do it without palliative care now.”

Marg’s story

Pat was very active in the community and helped a lot of people. He’s been the Town Crier here on Australia Day, and was Santa for years and years. He’s got good memories and he can talk with people. He goes to the Men’s Shed still and enjoys a chat and a cup of tea with his mates.

We’ve been married nearly 62 years, so we take it one day at a time. He enjoys the history channel on TV and I read him all the jokes out of the paper and that gives him a laugh.

Pat sits out on the verandah if it’s sunny and within no time there’ll be two or three neighbours chatting with him. All our neighbours are outstanding; they’re really good.

The palliative care team is such great support. It’s not easy and I get tired sometimes, so they help me to get out and see friends. I know I can call them if I need them. Pat’s kidney is only working at about 10% and he’s chosen not to have dialysis. We have our struggles here and there but we take it one day at a time and we get there. I don’t stress about it any more.

I’m Pat’s eyes now and so he just wants me here all the time. I want to keep him at home as long as I can. You don’t just give up because someone’s sick.

Pat says to me, “If only I could see your face once more.” I just feel that it is what it is, and I accept it. That’s life and we can’t do anything about it. We’re a team, so I make each day as happy as I can make it.

John’s story

My right big toe was failing to work. We went to two neurologists, and the second one said, “I’m sorry to tell you, but you have MND. I suggest you get your affairs in order.” It was surreal. It was a pretty horrific day.

We came home and I was stunned for a while. I think it’s a part of knowing I’m going to die. I got better at managing it, although during the early stages I’d often wake up and cry. I think I’m lucky, and I’m always looking for the hope clause.

A positive part of this type of MND is that it gives you time. Your body may be failing but your head can still think. Heather and I organised most things we had to do in the first couple of months, and then we mapped out our bucket list.

I have a group of good mates who are amazing, but it’s hard for them as well. We brought a vehicle that I can drive into, and it allows us to go places easily. My needs increase as time goes on, but we still go on lots of small trips.

John was diagnosed with Motor Neurone Disease two and a half years ago. His wife Heather is a nurse, so after John’s diagnosis, Heather left her job to

become his primary carer.

A journey we take together

I haven’t asked for any counselling yet, but I have spoken to the palliative care team about what’s best for our children. I would hate to be in my situation without a loving family and a couple of bucks behind me. I keep on hoping for longer, but we’ll see what happens.

Heather’s story

I think the diagnosis was worse because the first neurologist told us that the tests had knocked out all the nasties. So for us to go to the second neurologist and to be told it was MND was just gut wrenching. I couldn’t speak, and when we were on the road home, we stopped and bawled.

John said to me, “Give me something I can fight.” He’s such a strong person and our children looked to him to fix it. And then they looked at me, the nurse, and said, “Well, fix it.”

Things are a lot more settled now and we’re having a lot more fun. One of the things about being together all the time is that we’ve learnt more about each other. We’re also lucky that our first great nephew was born the same day John was diagnosed, and he’s been a blessing because he takes the focus away from us.

“The palliative care team …..keep us informed, making sure that we have got everything we need…”

The palliative care team has been fantastic. I feel very comfortable ringing to ask for help. They keep us informed, making sure that we have got everything we need; not just equipment, but grants and carers income support too. There’s also a program for John, if he needs respite. John’s having his first day in respite care shortly so he can see what Hospice is like, and to give me a break.

I’ve had plenty of time to think about John dying. I certainly think life is more precious. Occasionally I wonder how I’ll react, but I try not to. I’ll be sad and lost, here by myself in our dream home. I’ll deal with it when it happens.

Per and Pam’s story

Per and I have made a choice that works for us. Even so, I don’t believe that I would have been able to care for him at home as long as I have without the help from family, the Aged Care packages, and Fernlea House, the palliative care day respite service.

It was a shock when Per was diagnosed 24 years ago. Per only told me because I promised not to tell the children. It took him six months to tell the children he had Parkinson’s disease, and it was a big relief when we told the kids, and after that our extended family and friends.

We are lucky to have such a large family, and the support we get from them. Per’s illness has drawn the family closer. A really positive outcome is how the grandchildren have learnt to communicate easily with someone who has an illness. Unfortunately, most of them didn’t have the opportunity to see Per when he was really active.

Per was diagnosed with Parkinson’s disease in 1993, and more recently with Parkinson’s Dementia. Pam looks after him in their home,

with support from family and a range of services.

Staying together in our home

Per has been going to Fernlea House one day a week for the last nine years. One of their volunteers comes here for three hours every fortnight, which is just incredible and makes such a difference. We also have help with the gardening and cleaning. Up to now I’ve been showering and dressing Per in the morning, and getting him into bed at night, but it is getting harder and that concerns me. I have good days and I have bad days, but it’s worse when I’ve had no relief for a few days. More recently I’ve had some counselling, which has helped.

Once or twice a week I play table tennis, and sometimes I visit friends or go to appointments. These little breaks are really important to me, and while respite makes them possible, I don’t like to travel too far in case the car breaks down, and I’m always watching the clock.

It’s dramatically changed our relationship. The other night, all I wanted was a hug, but affection is rare for Per as he no longer really shows a lot of emotions. Lack of communication can be difficult, and it’s often hard to understand him. It means a lot when I get a bit of a pearler from him. We’ve been married for 43 years, and have had to completely reverse our roles. But I wouldn’t change it. I’d do it again for him.

Sometimes when he has a decline, it takes me a while to see it because I don’t really want to believe it. It’s very, very slow, and it’s very cruel. I really don’t know what the future holds but I want to be with Per. If I put him into permanent care, I’d be in there every day, which would be horrible for Per and for me. If we can’t cope here, then it would be lovely to go somewhere both of us could go together, and to live as a couple. It just seems so wrong that people get torn apart when they need each other the most.

“ I really don’t know what the future holds but I want to be with Per. “

Our thanks to: Helen and John John and Heather Pat and Marg Per and Pamela for generously sharing your experiences so that others are aware of the services available to assist. Your courage, dedication and fortitude are inspiring.

Palliative Care Victoria (03) 9662 9644 www.pallcarevic.asn.au Reg. Inc. No A0022429M