Sarah’s story (part two): ‘This isn't a job or something I can clock off from’

Being a carer for someone with dementia can be hard. Sarah describes how her emotions often fluctuate when caring for her mum, who has Alzheimer’s disease.

Being a carer for someone with dementia can take its toll. Sarah, in the second part of her blog series, describes how her emotions can often fluctuate when caring for her mum, who has Alzheimer’s disease.

Read part one of Sarah’s story for more on the initial diagnosis and the decision to move in with her mum.

Sarah's mum, who Alzheimer's disease Sarah’s mum enjoying the view

Sarah's story

I knew nothing about dementia care when my mum was diagnosed. I undertook some training and learning about the condition and, with some great support from the Alzheimer's Society, began the journey.

I can now only work part-time and noticing much more upsetting changes in her capabilities now. But by knowing my mum inside out, and being with her 24/7, I can care for her in a way that gives her independence and confidence that she isn't a burden and helps her live her own life, doing things with her to give her the best experiences I can.

Mum couldn't be any more grateful and sincerely thanks me daily for doing this - and that's what keeps me going. 

Being a carer takes its toll

The level of care and loss of independence (which will only continue to increase) really takes its toll, especially if I don't get regular respite. I

I've found my moods and stress levels fluctuating from pride and happiness to utter despair - within minutes. I have been known to go and sit in my car and scream at the top of my lungs just to give me a release so that my mum never sees/feels it.

My closest friends have to put up with me canceling things short notice, reluctance to commit to plans and not being relaxed or myself when they do see me. I don't know how mum will be on the day I have plans or what I will return home to.

Sometimes it's hard asking for help

This isn't a job or something I can clock off from - it's my mum, so it's hard for me to detach and not worry when I am away. I know I have to look after myself and focus on the positive but after a period of time without break - that can be hard. Sometimes respite is simply being able to have a glass of wine whilst doing the housework with my music on full blast - without having to explain or announce or have someone watching.

Sometimes it's hard asking for help as ultimately it has a direct impact on someone else and I feel like it's a favour to me, when it's not really, which is only my fault and no-one elses. I always get help when I ask for it and am never made to feel guilty for it.

Trying to explain a difficult day

That said, I find it really hard to talk about what we go through because I feel guilty. She's my mum and she cannot help this horrible disease and how she is. I never want it to come across like I am speaking badly of her or humiliating her.

I also don't want it to appear like I am seeking attention or sympathy as this couldn't be further from the truth.

But trying to explain a difficult day, with all the facets and tribulations this may bring is actually very difficult to do in a way that really portrays how difficult it can be. It's my life at the end of the day!

I often feel like I am moaning or not explaining it clearly enough to get my point across and I don't actually strive to achieve anything from it other than my own personal release!

To be continued...

Read the third and final part of Sarah’s story. Here she looks to the future and where that may take her and her mum. If you need support and advice after receiving a dementia diagnosis, you can call our National Dementia Helpline on 0300 22 11 22.

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6 comments

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Thank you for your honesty explaining the daily stress of looking after your Mother. On part one I noted my website which was compiled after the Death of my Wife Pauline to advise people in this situation . NHS should provide Continuing Healthcare benefits, including a Personal Budget , so that Carers can be employed to come to your Home daily . This will give you a much needed break , plus more extended Respite Care on a regular basis , funded by the Personal Budget .
Look on https://continuinghealthcare.wordpress.com/ , but be prepared to fight for your rights , & be well prepared for the Assessment Meetings . Best Wishes .

It is good to see that someone has put into words what life is like looking after a parent with this horrible condition, and the guilt that you feel, my Dad is at the moment in a care home should have been for 4 weeks but after 4 days he says he wants to stay there and I feel that I have let him down, and feel so guilty and I know everyone will say that is silly but when you have looked after a person that feels like all your life you do feel there is something you haven't done. Each day you loose a little more of that person, always try to remember what they used to be like.

Sarah, you are a wonderful person. Your genuine love for your mother is obvious to anyone reading your story. When strong emotions enters one's experience they create
havoc with rational thinking. No body can sensibly say that you are seeking attention or trying to impress any one. The depression is a normal response to a very sad situation. You have no need to feel any guilt. You are obviously a sensitive and caring person and guilt may be because there is no cure for this dreadful illness. I will accept frustration as a probably better description of the emotion. Sharing your pain helps to reduce its burden. You will be in my thoughts and anything I might be able to help you with I would consider it a previledge.

Yet another very sad story.Caring for a loved one with dementia is 24/7,relentless
stress and pressures.Only those who go through the agonies and pains will fully realise.Well done Sarah.It is hard and largely you struggle on by yourself and will have to continue to do so.

On the financial side Continuing Health Care is devolved to local Councils who very,
very,rarely,along with all the Social and Welfare cuts are cash strapped although some have vast reserves of funds sitting in their coffers!

Patrick please note Alzheimer's Disease is a " Primary Health Need" so should qualify for funding from NHS & not Local Government Social Care resources . When preparing for an Assessment Meeting you need to be very careful as NHS can be expected to make light of the " Needs " in order to avoid paying from their limited resources . NHS test the level of " Need" & financial resources are not an issue .
My website explaining the facts & legal precedents is on https://continuinghealthcare.wordpress.com/
Best wishes to all Carers.

Hi Sarah ,
You are doing a great job looking after your mother single highhandedly . Just keep it going as long as the love/ care for your mom comes within . In today's world of intolerance and hate , you have set a splendid example for others to follow me included . My own mother has been suffering from Dementia for the past two years and am aware of the efforts you would have been making to take care of your mom and the pain you would have gone through . Would like to share with you a prayer which may help you to heal . God Bless .
Healing Prayer .

Light before me
Light behind me
Light at my left
Light at my right
Light above me
Light beneath me
Light unto me

Light in the eyes of those who see me
Light in the ears of those who listen to me
Light in the hearts of those who think of me
Light in the hearts of those of speak of me

Light restore me to health

Light be always in my heart
Light be within me
Light establish me forever
Light be around me and preserve me
Light be before me and lead me
Light be within me and give me life

Light be near me and rule me
Light be beneath me and fortify me

I love the light in those whom I may have offended,
Knowingly or unknowingly
May the light be with them .
So be it
So it is
It is done .

Adapted by Dr Joseph Levy from an ancient Christian prayer .

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