Real stories

Dealing with mum's young-onset Alzheimer's diagnosis: Neil's story

Thank you for sharing your experience. I am sure it will resonate with many people. Sending my thoughts to you and your Mum.

My mother is 91 and has stage 4 Alzheimer's. She has lived alone for the past 29 years since my dad died. She has cleaner, hairdresser and chiropodist services provided at home, and Age Concern outreach every week. Mother has recently refused to attend a Community Club because she says she does not like being in the company of elderly people. Her unsociable behaviour and a constant non- compliant attitude to all suggestions of assistance are always refused.I do not like the person she has become and struggle to be civil and respectful towards her. Not everyone's story is positive or heartwarming. Mine is one of them.

I am full of admiration for you and your mum. My mum sadly has this wicked disease, and she moves away from me each time I see her. It truly is a long goodbye that is hard to bear.
She is now in a lovely care home, and we do still have a giggle together, I know that she is safe and well cared for, the staff have got to know her ways and really understand how she likes things. I wish you well in your search.

This made me cry. I cry every day. In private. My husband was diagnosed 11 years ago. It really is the long goodbye. Every day I want to see him. I go 4 times a week to the nursing home that takes care of him. Always hoping he will smile at me. He was only 65. And very fit apart from his brain. It is a very cruel disease and I really understand the unhappiness of other people that are trying to care for the person they love. I wish you well and that the care home you choose will make you feel so much better about his care. It will not be easy. xxx

Hi Neil
I too can sympathise with what you are going through. My mum was 98 last week, and she has had Alzheimers for the past 4 or 5 years. I am her main carer and have looked after her for this time. I live with her (I am 68 with a caring brother who lives 90 miles away - he supports me by phone calls each day as he cannot come up very often). Mum wasn't too well end of January and she was admitted to hospital on 25th January to one of the local hospitals, then next day moved to another hospital, and on 13th February she was admitted to a nursing hospital. She is hoping to come home tomorrow and I have all sorts of equipment for her in the room as this will now be her bedroom. Whilst in hospital she has become less able to stand and now needs a hoist, plus she has become doubly incontinent which was heartbreaking for me to hear and the hospital thought I knew - she wasn't like this before going into hospital. I will have extra carers in for her, and I hope I can cope with the support of extended family and local friends and carers but its going to be so hard but everyone says I am doing a fantastic job and have done looking after mum for all this time. I hug her and hold her hands every time I see her, as I don't now expect much conversation. If I cannot cope my brother and I have agreed that mum would have to go into residential care, when no doubt she would become more confused (even moving her from one side of the ward to the other in the latter hospital agitated her) Take heart in knowing a lot of people know what you are going through. As people say to me, keep smiling.

Your story is very moving. Your mum is a very lucky lady to have such a special son. Enjoy her company as long as you can.

Hi my name is cathrina and I know exactly what you going through, it is so hard being the only one to care for a parent, but you sound to be a very loving and strong person, I have my mother age 91, and in the latter stage of dementia, she was only properly diagnosed last year, and from that she has went downhill so much, as I'm the only member of the family. I have to care for her all the time, have home help coming in when I go to work, every day has being a challenge for me and most of all for her, I stay evety nite, and it is physically and mentally draining, so at the moment mam is on a waiting list for home care in a demintia care unit, I have picked the best place possible where I know my mother will be properly cared for, and give me peace of mind. It is the toughest thing ever dementia, as it hard to look at a parent declining every day, for a person that was so alert and active all her life. Anyways for everyone out there that has to face this challenge, may u have the courage and strength to get through, and never feel guilty, as choices have to be made to ensure safety. Kind regards cathrina

JohnK- I can only sympathise. I looked after my wife who was diagnosed with early onset at the age of 59. I too saw her gradually deteriorate until last year I couldn’t cope with her at home any longer. She is now being cared for in an outstanding care home at significant cost to the family with no support from the NHS. For me the feeling of guilt at not being able to cope with her care at home will not go away and I still harbour thoughts of bringing her home but I fear it is wishful thinking. Alzheimer’s is a devastating disease.

Thanks for sharing your story. Your an amazing son for your mum. I was mum's carer to. It's definatly a roller coaster ride. I would do again in a heartbeat

Your love for one another is phenomenal and rare. Unconditional in every aspect, your dedication, admiration, time, generosity and respect for your Mum give her the will, strength and purpose to continue and keep on living.

You know in your heart what needs to be done to ensure your Mum has 24/7 safety which gives you and her 'peace of mind,' even though it may not be the direction you would like to head towards.

Be kind to yourself and love yourself every single day Neil, a very important aspect to keep you grounded. In saying that, you obviously have your own strategies in helping yourself during the years you have cared for your beautiful Mum.

My admiration for you is beyond words, being on your own without sibling support must be extremely difficult.

My blessings, goodness, prayers and respect I send to you today and for everyday. May you and your Mum continue to laugh, cry, hug, kiss and do all those beautiful things by just being together and for each other, especially under the circumstances. I, 100% understand both your journey.

Kindly, Eddie

Neil I can hardly read for my tears, My lovely husband is in the same situation, he in a similar situation, Just recently he had to go into full time care, because I have a serious health problem and the medical people insisted that he needs more care round the clock. It breaks my heart and I promised that I would keep him at home, He keeps asking to come home to be with me. He has Vascular Dementure and Alzheimer’s I have looked after him for several years. I feel so sad and guilty. I see every day and I hate leaving.
You are an inspiration to us all Well Done keep strong, you are a wonderful person. Tace care x

Neil, your story is so touching and humbling to read. You should feel proud of yourself for stepping up and taking care of your lovely mum the best way you can. I wish you all the strength in the world to keep going and supporting her. Take care x

Neil, I have always known you as one of Lee's mad friends. Always laughing and joking around. Lee had told me about your Mum and how well you look after her. It must be so hard for you to see this happening to the person you love the most. Mum's are special people and I am sure you will carry on doing what you are doing to make her life as good as you can. I think you are amazing person, to deal with such an awful illness as you do.

When I come across you at work, I’m always surprised by your smile and your vitality. In this world of sad faces and egoism it is a Blessing to meet your kind face.
I didn’t know about your family situation and after reading your story I admire you much more. Your mother and your friends are incredibly lucky to have you by their side.

Such a wonderful story. Yes very sad, but truly remarkable. Wishing you the strength to smile and be with your mum as long as possible so she has the best quality of life she can. Losing my mum at the age of 52 was very hard for me and leaving in a different country did not allow me to be with her thru her tough journey.