The Coping with Dementia DVD is made up of 7 chapters. This page features ‘Coping with caring’ – chapter one of seven.
You can watch all the chapters in order, or you can watch a single chapter on its own in any order – choose what suits you best. Some chapters may be more or less relevant at different stages of your caring journey – if you don’t feel you want to watch a chapter now, you may want to view it at a later date.
In this resource you will hear/see references to Health and Social Care Partnerships. These partnerships were created in April 2016 and are the organisations formed as part of the integration of services provided by Health Boards and Councils in Scotland. They are responsible for the planning, funding and delivery of a range of community health services and social work/social care services.
Please be aware Chapter 7 contains sensitive information about the later stages of dementia and we suggest you only view this chapter when you are ready.
Coping with Caring (chapter 1 of 7)
Transcript of the Coping with Caring film
Welcome to this DVD for people caring for someone close to them who has moderate to severe dementia. You will hear from other carers, and find out about practical ways of coping and how to get help. There are many kinds of dementia and every one is different, so remember, not everything we talk about will happen for you and the person you care for; but if it does, you’ll be more able to cope.
Emotional reactions
I think caring for a relative that you love very much developing an illness like this is really, really hard at times, I felt mum was moving away from me all the time and it became harder and harder to almost keep a hold of her.
There are times when there are lighter moments and I remember having mum home one Christmas, to spend Christmas Day with us and my husband who she’s known for about 20 years and is very close to, she kept referring to as ‘the driver’ – the driver’s very nice – and you just have to find humour in these moments and let go.
I think the hardest thing was coming to terms with Dementia when Andrew was diagnosed. Nobody believes it, you don’t even believe it, he doesn’t believe it, ‘nothing wrong with me’, says him and you have to try and deal with this and I’ve probably never felt so alone in my life because suddenly all this world was changing around me, he was changing, things that I’d noticed and didn’t understand why, now I started understanding why because people were starting to teach me how to deal with it but until that point I was so alone.
I have fun when I´m visiting Betty. She is very happy to see me and she always holds my hand. Betty becomes more lively when I´m with her. She looks forward to eating sponge cake which I bring her. It is a good conversation starter and we have a good laugh together.
But when I leave and go home, Betty changes and she becomes very disheartened. This is because she is all on her own, left with just the four walls, and Betty becomes very emotional and is again very isolated. Betty wants to have me all the time, 24 hours. She needs that encouragement in playing games, laughter and company. Without me she would be very alone.
My situation was that my dad was in his eighties when he was diagnosed with Alzheimers Disease and my mum too was elderly, so it was quite difficult for her to adjust to my dad losing his memory and losing some of his skills in daily life and becoming more dependant on her. So, my sister and I had to, not only support my dad, but to support my mum to care for him.
I think that one of the good things with my dad when he was becoming less aware of the world around him, it meant that he was actually more able to just enjoy the moment, so we had some lovely times just laughing at things that amused him and just enjoying being out and about and meeting people he knew and that kind of thing, and he loved to sing so that was really nice to see him enjoy himself singing. He would say ‘have you heard this one?’, and would launch into the same song for the tenth time that day but it was just so good that he enjoyed it so much.
One thing that made us laugh was that when my dad was taken by a support worker to visit Lomond Shores one day, they were watching the ducks on the loch and my dad was so amused by the antics of the ducks he laughed uproariously and people all around looked to see what he was laughing at and they all laughed too, so I think he brought fun and laughter around wherever he was.
Carers come from all walks of life. You may have given up your job and be having to manage on less income than before, or have had to move home. If you care for your partner then you may miss their support and other changes may present themselves that in the past kept you close. Caring at a distance brings its own worries too.
You will become the expert as you will see the changes in the person that others may not; so you may feel that other people don´t fully understand, which can be frustrating and make you feel alone. But it is important to remember you do not have to do this alone. Ask for help early - it is available. Don’t bottle up your feelings. Talk to a friend or relative you know will listen, or maybe talking to a professional, or someone who can offer you spiritual support would suit you better.
The Dementia Helpline, on 0808 808 3000, is there 24 hours a day and is confidential. They can access interpretation into other languages. They will listen and can put you in touch with help near you. Use the Helpline to find out about all the organisations and publications mentioned in this dvd. Or you can email on helpline@alzscot.org.
Other carers have probably been through the same kind of things, and talking to them may help you. There are carers´ groups in most areas.
At first my friends and family were all there, but gradually it felt like I was standing on a vast beach, and the tide had gone out, and I was all alone.
It is important you don´t hide the fact a relative has dementia. It is nothing to be ashamed of.
Once I started talking to my friends and family about the dementia, things changed, and I was able to ask them for help.
I get stressed and my family helps me a lot. A home help told me "you need to get out of the house. Go to Deaf Connections". This helps me because I am deaf. I go to play chess which I love. It helps me to rest and relax.
I decided not to give up work completely but I did negotiate hours with my employer and became part-time so that I felt I could give mum time but I also was getting the support from colleagues and the motivation, the satisfaction from still continuing to work.
I suppose, in my own time, something that I found extremely helpful was just going for long walks – that’s something I’ve always relied on at difficult times.
One of the hardest things in coming to terms with this is that you want to be perfect, you want to do the best thing you can for your husband and you’re given this long list of things which you can do and suddenly you realise you can’t do it and you feel so incredibly guilty when you don’t do it. You’re not this paragon of virtue, you’re not this person, this super-human person, who can be doing the right thing at the right time, all the time and really the worst thing is coming to terms with that and realising you don’t have to feel guilty about it.
I’ve found that if I don’t keep physically well, I can’t cope. And so I’ve done exercises, I do swimming, I did cycling, I work in my garden, and keep active because if I can be physically well, I’m able to cope so much better.
Arrange regular breaks. Family, friends, a local home support service and day centres can help. Ask for short break respite to give you a weekend, week, or more, away. The Getting Help section of this DVD will tell you how.
Try not to become isolated. Explain the situation to family and friends. The booklet "I´ll get by with a little help from my friends" will help you explain to them what they can do to help.
Take time to yourself. What do you like doing? Make some time for you each day, even if it´s only for a few minutes. Alzheimer Scotland´s booklet "Looking after yourself" may help.
You and your family
Many people with dementia enjoy time with children. Talk to the children about the illness. Help them to understand. Offer to explain it to their friends as well. The booklet "Understanding dementia - a guide for young carers" may help them.
When we were younger we used to go down to the old peoples home and we would make Christmas cards and go down an give them to them and spend an hour or so chatting with them and hearing stories about their Christmases and tell them what we were doing in our Christmases and all of that. We would just chat away to them and it was good for them because a lot of them didn’t have friends or family left any more because quite a lot of them were older so they got to have a chat to someone which was really good, it was really rewarding.
Looking after someone with dementia brings changes in family relationships. It´s possible that you may feel you are doing more than your fair share and resent this, or maybe the family worry about you wearing yourself out.
Talk to the rest of the family. A specific discussion about how to care for the person with dementia can be very helpful. Having someone else take part, such as a close friend, social worker, doctor, or minister, can help everyone get a fair hearing and solve disagreements about what´s best.
Share the care
The benefits of getting help early really help with isolation because you can be isolated if you think nobody understands, so from a practical and emotional point of view gaining information and being with people who really understand are hugely beneficial.Don´t feel bad about asking for help. Getting help early may also help the person with dementia get to know their support workers. If possible involve the person in discussions about their care. Remember not everyone around you will realise the need for help, so just ask. The person with dementia will also enjoy the different company.
Ask the social work department for a community care assessment and a carer´s assessment. It is important to make full use of the services available.
Getting information
It’s easier to deal with most things in life when you have enough information. The Dementia Helpline is run by Alzheimer Scotland, and can provide information on literally anything. If they don’t have the answer to hand they will try to find out. You can get free copies of all the booklets we have mentioned by calling the Dementia Helpline and it’s open 24 hours a day. The number is 0808, 808, three thousand.
Most people who become carers find they are having to learn by trial and error, but research has shown that training may reduce stress levels for carers.
Alzheimer Scotland and carers’ organisations arrange courses for carers, which will give you the chance to get accurate information on the illness, services available, financial and legal matters, and how to cope.
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Reviewed 09 March 2018