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Alzheimer's diagnosis - help and support

Updated: Jan 19

The forget me not flower is one that speaks to so many of us - I have noticed at markets that this is a flower people gravitate towards. It's such a pretty little flower and a wild one too, and has a very evocative name that so many of us connect with.

It is particularly poignant for anyone who has experienced Alzheimers or dementia in a friend or family member. My forget me not cards and prints so often act as the starting point to a conversation about peoples own experiences with this awful disease.

At my latest market I was lucky enough to meet and chat to a number of different people on this subject. One lady had looked after her mother who had Alzheimers for 15 years. It took a huge toll on her and partner, as well as on her immediate family. I really felt for her as she talked about money struggles and the strain it put on family. She said that sadly, she had not been able to keep any family photographs, but having kept some of the plants from her mums garden she said that nothing made her feel closer to her mum than when she saw those plants flowering each year.

My parents in their garden

Someone else I met was with her mother who had just recently been diagnosed. She had been handed a diagnosis for her mum but was left not knowing what to do or where to turn from there.

I have been in that situation with my own parents, one after the other; it's incredibly hard, and makes an already difficult situation into more of a slog.

It really is a hard, lonely and confusing situation to be in because there are no obvious steps to take in the initial stages, and support for your loved one as well as for you as the carer is not always obvious or easy to find. I remember floundering, being directed to one or two places to start with which then led to a couple more and so on. What I craved was to find somone else who was in my position - I was a new mother with an 8 month old baby, suddenly thrown into the world of caring not only for a small child but for a parent with dementia. I was caring in two directions at once and it was difficult.

I don't know what the answer is but I really feel there should be a comprehensive list of organisations, support groups and services in every area that can be handed out to carers at the very beginning, as well as an initial checklist of things to put in place.

Bit by bit, I found myself dealing with GPs, consultants, social services and other professionals, as well as discovering some incredibly supportive people and organisations who helped with social groups for my mum as well as the drivers to get her to them, people to drop in and keep her company, and also some really great free support services for myself as a carer.

I thought it might be useful to write down some of the things we did that were useful and some organisations I found helpful for support. If you or anyone else you know can benefit from these I would be very pleased.

Please note that some of these are based in and around Kent which is my local area, but some will be more general and National.

Admiral Nurses - national

Admiral nurses are specialist dementia nurses who are there to help you as a carer. I found my designated Admiral Nurse to be invaluable and a great support. They are all specialist dementia nurses who help and support families of people affected by dementia including Alzheimer's disease.

Age UK - national

Both my parents were very averse to having any kind of outside help coming into their home. However, through Age UK we were able to find a cleaner and gardener who could each come in once a week and help, as well as have a cup of tea and a chat with mum.

Call and speak to them about how they can help you in your situation.

Carers First - national

Carers First are a fantastic organisation who provide information, guidance, emotional and wellbing support, as well as practical help and financial assistance to carers. Experiencing their kindness and benefitting from their knowledge of other services was so helpful and I'm really grateful to them for providing some light in a dark time.

Crossroads Care - Kent

Crossroads are another lovely charity in Kent design to help carers. They helped us by taking dad out once a week to give my mum some time at home alone - a bit of short respite on a weekly basis. One small thing can make such a big difference.

They offer so many more services and champion the needs of unpaid carers across kent.

Involve community transport - Kent

When you're working and/or have children but care for a parent you can't do everything. So I found it incredibly useful to find an organisation near me that provided transport for people like my parents who could not drive or use public transport. The drivers are all DBS checked so you can trust them to be safe.

We used Involve Community Transport, but if you search for 'community transport' for your area, perhaps on your local council website you should find one in your location.

Brain Train - Kent

A lot of the day care centres and social groups near us were no good for mum and dad, but for mum we discovered a fantastic group called Brain Train for mum which ran in Headcorn Village Hall - there is another in Ditton near Maidstone. Similar groups such as Cogs Clubs are run throughout Kent, providing a fun, structured social group that also helps to support the memory and assocaited problems.

The 3H Foundation - national

This wonderful organisation gave me some respite days which were an absolute treat and a lovely break from the worry and stress of caring. I also got to meet some other carers and chat with them which was helpful. They offer much needed respite, holidays and grants to support carers.

These are just some of the brilliant organisations I discovered on my Alzheimers care journey. I'm so grateful to them all for playing a part in keeping my parents happy and safe, and supporting me in caring for them as well. It can seem as though you're alone some of the time, but there are people out there who have the skills and ability to help.

Also contact the Alzheimer's Society who have a range of support, information and advice, and yours or your loved ones GP surgery should be able to put you in touch with local services and support as well.

Other things to think about:

Set up power of attorney if you haven't already. You will need to manage their finances and health and welfare.

Contact social services for a carers assessment for you and a care needs assessment for the person with Alzheimer's/dementia.

Sometimes it's hard to do this when you're so overwhelmed with caring, especially with financial or childcare constraints, but remember to find time for things you love to do, and look after yourself. The biggest risk to someone with Alzheimer's is something happening to their carer - put your own oxygen mask on first!

My top tip? In the inital stages, find ways to put care in place that isn't actually carers. If you're worried about your friend/relative with Alzheimer's not being looked after or having any contact with someone, get a cleaner/gardener/hairdresser that can visit them at home and have a cup of tea and a chat with them on a regular basis. Age UK can help with people who are DSB checked to give you peace of mind.

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