Belfast Telegraph

Saturday 29 November 2014

Living a life with Alzheimer's

Alzheimer's Disease has devastating effects on the sufferer and their loved ones - as Mike Baldwin's family and friends are finding out this week in Coronation Street. In a special two-part feature, which continues tomorrow, we talk to Ulster families trying desperately to cope

Alzheimer's Disease has devastating effects on the sufferer and their loved ones - as Mike Baldwin's family and friends are finding out this week in Coronation Street. In a special two-part feature, which continues tomorrow, we talk to Ulster families trying desperately to cope



At the age of 58, Marie McCabe from Bessbrook, Co Armagh, was diagnosed with Alzheimer's. Now, at the age of 69 and in the late stages of the illness, she requires round-the-clock care.

Marie lives with her husband Frank and they have six children: Jim (47), Peter (45), Greg (40), Claire (30), Pat (34) and Sean (23), and nine grandchildren. Here, Greg and Claire tell Judith Cole about their shattering journey with their beloved mother and how they find hope amid despair





Greg, a milkman, and his wife Bernadine have five children. He says:



When my mother was diagnosed with Alzheimer's Disease over 10 years ago I simply refused to accept it. Even now I still can't believe she has this, surely the most cruel of diseases.

All her life she was so vivacious and beautiful, and had a bright smile for everyone she met. Not only did she bring up six children, she also found time for voluntary work, home help, going for walks and lending a helping hand to anyone who needed it. She also cared for her father for 20 years after he had a stroke.

Her energy and love of life is why I cannot believe what has happened to her. Her slow decline over several years to the person she is now, bedridden and unable to communicate, has been heartbreaking for the whole family.

It's an awful thing to say but I believe that Alzheimer's Disease is worse than cancer. Someone said that you really lose the person twice: firstly, when they decline; then when they eventually pass away.

I've seen bits and pieces of the Coronation Street storyline but I have found it very difficult to watch because it feels so close to home. Like Mike Baldwin, Mummy would get frustrated if she couldn't express something the way she wanted to or if something was annoying her, or she would walk a different direction to that which she'd intended.

There was a noticeable difference in Mummy after several of her friends, including her cousin to whom she was very close, died of cancer. She was always on the go visiting her loved ones and also looking after her own father.

Then, my father would remark on unusual things which Mummy had started doing, like leaving the cooker on or not putting the ornaments back in place after she'd been cleaning.

She was also rather depressed, and had taken to lying on the couch a lot. She was annoyed easily, which was most unusual for her. However, I thought it was because of the tragedies of her close friends passing away. I had no idea it could be the beginnings of a devastating illness. When someone is aged 58, you simply don't expect that to happen.

We also noticed that our mother would take longer than usual on her walks. There were times when I panicked, jumped into my car and drove here and there looking for her. We were very worried that she'd have a bad accident. Our worries gradually increased as time went on.

Mother was seeing various doctors around this time and when my father rang all the children and told us to meet at my eldest brother's house because he wanted to talk to us, I was desperately concerned. We all wondered what on earth was going on.

When we were all sitting down together, my father told us that mother wasn't well. He said it could be Alzheimer's Disease - but I thought that there was no way my mother could have that.

I couldn't accept it ... and I still can't.

Your mother's your mother and there's no one like her. She was the lady of the house. I could have gone to her any time and asked her anything, and I lost all that.

Claire, the only daughter of the family, was a lot stronger than me - despite being 10 years younger. I know she found it unbelievably tough as she and mummy were best friends and did everything together. But, while holding down a job in which she did 12 hour shifts, Claire took on the role of mother. Our brothers Pat and Sean were still at home and, although I called in to visit often, it wasn't the same as living there.

Things gradually became so hard for Claire that she couldn't cope and her health was affected. She went to live with our uncle in Florida for a year and, although we missed her, we were glad she went away, for she was so much better when she came back. Even now, I can tell things to Claire that I would have talked about to my mother.

I think my mother realised that something was wrong with her. She was diagnosed within about six months and improved a bit when appropriate drugs were prescribed, including Aricept, one of the drugs which the NHS rationing body, NICE, has ruled should not now be prescribed for early or late stages of the illness.

She was more alert and there were days when we remarked on how well she was looking or how she seemed to be in good form. Even the grandchildren would sometimes say, 'nanny's great today'.

However, she was up and down like a rollercoaster. I think that the tablets certainly have helped to prolong her life, but I hope that some day there will be a cure.

It's so sad that Mummy has missed out on so much, including her grandchildren and all the birthdays and celebrations that go with them. Our daughter is only a year old and she would have enjoyed her so much.

We know that our mother is in the late stages of the disease but we don't think about the future. Last year it was touch and go a couple of times when she took bad turns and was ill for a few days. For some time now she has required round the clock care and during the last few weeks she's been bedridden.

It's been so hard to see her go from someone who was so active, then slowing down a bit, and then not moving from her bed and unable to converse.

Dad's coming 70 and is just happy to be around the house. He loves being with the grandchildren and does some voluntary driving, which is good to get him out and about. Years ago he and mummy would have gone away a lot and he loves watching video tapes of their trips, and their wedding anniversaries. It's his way of coping.

We have carers who come and help, and this has been a great relief to the family. I feel I don't do enough but I just can't handle seeing my mother in this way.

We didn't know anything about Alzheimer's Disease when Mummy was diagnosed and only learned through word of mouth that there's an area office in Newry and support workers. We are so grateful to Frances McMahon, the outreach worker there, and all the work the team has done for us.

Because of the support they've given us we decided to do some fundraising in an effort to give something back. We have collected about £41,000 and all the fundraising has enabled the Newry office to start its respite scheme, amounting to 200 hours per family in the local area.

I've met many different people through our charity work and I distribute leaflets during my milk rounds. People talk to me and tell me that they have a relative with the disease and it's great to be able to speak to people in a similar situation. But there are people out there who don't know who to turn to and the support that's available needs to be highlighted.

It's such a cruel disease that it's essential to have as much support as you can get. We are all so grateful to everyone who has donated to our fundraising campaigns and I hope that some day we will have a cure.

And, as I always say, please remember those who can't.





Claire lives at home with her parents and brothers, Pat and Sean. She says:



My mother was my best friend. We did everything together, including shopping and going out to parties and having a laugh. In some ways mother's life should have been just beginning, for she had raised her children and was ready to have time to enjoy herself.

I was engaged to be married and we were excited about that. But we could never have foreseen the most unthinkable tragedy which would shatter our lives forever.

A few of Mummy's close relations died, including her cousin to whom she'd been very close. Her granny and granddad, and later her own mother, also passed away. And she'd spent 20 years caring for her father, who'd suffered a stroke.

Mummy was very low after all that. She was crying all the time and we wondered if we had done something to upset her. But as there was no sign of an improvement - indeed, she appeared to be getting worse - we got doctors to investigate.

I was sitting with our mother in the doctor's office when he was assessing her. He asked her a series of simple questions like the name of the president of the United States, and she couldn't answer them. I really panicked then as I didn't realise she was so ill.

Initially, mother went to stay in respite care and we'd take her out for walks in the garden, and bring her ice cream from the shop. She seemed content, but after we brought her home again and later took her to respite day care, she would protest that we were going to leave her there and not come back. She knew there was something wrong and would get very frustrated.

But she did improve when the doctors sorted out medication for her and there were even times in the earlier stages of her illness when I questioned that she had Alzheimer's at all.

My life, and the lives of our whole family, changed completely. I was working 12 hour shifts and then coming home to cook the dinner. People told me it was important to live my own life, despite what was happening to Mummy. I tried my best and went out with friends when I could, but over time I was worn down and became depressed.

My engagement sadly broke up and it got to the stage when I wasn't getting out of bed and didn't want to go out. I was desperate. But I went to see a doctor who really helped me - otherwise I don't know what I would have done.

I decided to go to Florida and live with relatives for a year. It gave me time to get things sorted out in my head and consider what I wanted to do.

Now Mummy sleeps a lot and we were very worried last year when she took a turn for the worse. My sister-in-law and I sat and cried as we wondered if she was nearing the end. I phoned all my brothers at work and told them not to panic, but that they should visit that night. But the doctor came and checked her breathing, and she was grand the next day.

It scares you when something like that happens. I just try and take every day as it comes. I don't think about what might happen in the future.

On New Year's Eve we had visitors to the house and they were crying, but it was the first year I haven't cried. I asked myself if I was wrong, but we try to be positive and remember that it was another year we had with Mummy. We just thank God that she's still here.

I think she can still sense things. I came into the house the other day and said, 'Mummy, it's your birthday tomorrow' and she started to cry.

It feels terribly unfair. Poor daddy lost his wife and it must be awful for him. He talks to her all the time and sometimes she answers 'yes' or ''no'.

Some nights I get into bed beside Mummy, talk to her and hold her hand. I imagine she's squeezing my hand and that maybe she does hear me.

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