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Do you have a Relative Living with Dementia?

With Dementia Awareness Week coming up from the 15th until the 21st of May I wanted to write something this year to help highlight this subject which has affected my family a great deal and I hope to help raise awareness and help others through my post as we now have 850,000 people in the UK live with dementia.  Some of my readers will be aware that I lost my gran last year at the age of 91.  During the last few years of her life my gran had begun to lose her memory hardly surprising at that age but still not a pleasant experience for anyone.  Only months before she died she was finally diagnosed with Alzheimer’s disease the most common form of dementia.  Alzheimer’s is the gradual loss of memory and communication skills, where symptoms are severe it can affect people’s ability to perform daily activities.

Barchester 3For years I had been visiting my gran with my little ones and watched as she slowly deteriorated.  She seemed to be stuck in a loop with questions for example and during the time I would visit would ask me the same questions over and over numerous times.  Of course all you can do is be patient as the same questions are being asked unintentionally.  After a visit I may have been asked if I wanted something to eat or drink maybe 10/12 times or more depending on the duration of the visit (and that was just one of the questions in the loop).  It was heartbreaking to see her struggling especially nearer to the end, she wouldn’t recognise that she was at home on some occasions and would ask to go home.  She thought my mum was her dead sister, the confusion was clearly very upsetting and annoying for her as she would seem to slip in and out of remembering certain things.  Caring for her was not easy as she had always been a very strong willed person and to feel so helpless annoyed her immensely and she would take out her frustrations out on those around her.  I tried to help where I could but my mum and aunt took on the brunt of the work.  My mum would stay there overnight, coming home briefly if she had someone to help the following day and then going back to do the night watch again.  It took its toll on all involved.  My mum was physically exhausted my gran at the very late stages even got verbally abusive and would yell at all around her through her frustration and feeling of utter helplessness.  Having experienced this firsthand, I feel that my gran may have been better off in a dementia care home with people that were better equipped to look after her alongside the family members being there as much as each could be.  I felt for my mum who has problems with her back trying to move my gran to dress her bed sores that she had developed after a stint in hospital or trying to help her go to the toilet.  By this stage my gran could barely walk and at 5ft 5inches tall (slim framed) was extremely heavy and difficult to support especially as my mum was shorter than her.  Some of the older generation family members were not too keen on taking my gran anywhere to be looked after which was a shame as I feel all suffered more than necessary because of this decision.  In the end I convinced them to get help from someone with experience in supporting my gran in her own home but due to the layout of the house it wasn’t as easy for them as it would have been in a home.

Barchester 2I appreciate that deciding to take an elderly family member to a care home is a hard one but sometimes it can be in their interest to do so.  But then equally as hard a decision is deciding where one might take their loved on to be cared for.  Ideally you need a care home accredited by companies that work to help those with dementia.  The staff need to be well trained, the facilities need to be suitable to cope with the requirements of the patient such as easy bathroom access, the type of care available needs to be suitable with a personal approach from people experienced in the care of dementia patients so that the care is similar to what patients would receive at home with patients feeling safe in their surroundings.  There are so many things that need to be considered when choosing a dementia care home.   One point that struck me with these homes is that the staff are very happy in their job.  This company won a top employer award in 2015 and was featured in the Sunday Times in 2014 as a Top 25 company to work for.  It makes sense that if staff are happy then the residents will also be happy.  I hope that this is helpful to anyone going through what my family went through last year, after all if we could all cope having a loved one at home that was ill we would but unfortunately it isn’t the case with many and this looks like a great alternative.

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This Post Has 60 Comments

  1. I haven’t had first hand experience of having a family member suffer from dementia. I do know friends that have and I know how heartbreaking it can be.

    1. It’s awful to go through but it helps when you have support around you.

  2. My Gran bless her had dementia – it was so horrid to see, seeing this women who once loved you so very much no longer know who you are. x

    1. It can be extremely hard to cope it Sarah x

  3. I think it must be incredibly difficult to watch a family member suffer from dementia. I worry it will happen to me too one day, even though thankfully it doesn’t seem to run in our family. Great post!

    1. Thanks Elizabeth, I do get worried as my memory isn’t very good already but then it’s tiring having 3 children.

    1. It can be, hopefully it won’t affect your family.

  4. It’s heartbreaking to know what some people go through, especially if they don’t have a lot of support or help. x

    1. It can be very difficult to cope with.

  5. My aunty and a few family friends have dementia
    The variation and how much they’ve changed is hard to believe

    1. It’s shocking really to see the change over the years. An awful thing to have.

  6. My grandma had this and it was just heartbreaking. She basically reverted to being a child again, could remember nothing nor do anything for herself. My mum and dad cared for her despite working full time themselves, and the effect it had on them and their own health was evident. An awful disease.

    1. It really takes it’s toll on all. Such a horrible thing for anyone to deal with. I really feel for you and your family as I know how bad it can get.

  7. hi what a lovely read,my mam was 80 last thursday,sadly she has dementia and has had it for 3 years now.out of all my family i am the youngest and i have been with my mam practically every week of my life and my children saw her almost every day.then 1 day this disease came and turned our world upside down.i didnt realise at first when i had 3 cups of tea waiting for me and more milk in the fridge,it was when it got really worse and i took her to the doctors and had to take all the tests my fears were confirmed.over the years i have seen my mam look at me in a different way,i encourage her to say mam what is my name again and 9 times out of 10 i get allison and then sometimes she will call me by my sister or by one of her sisters.she couldnt live on her own and as much as i tried and got help from my sister for a few months my sister decided she would go live with her as my children were the youngest and hers were all grown up in late 20s.she lived my sister for year half and in this time she went down hill so we had to put her in a care home where she has been for a year and a half.she is in the best place and i know as hard as it is when i take my young children in to see her i miss my mam so much.i wish i had that phone call again or the message saying she is coming up ours for tea,thats the things i miss the most and mu children cope so well as its hard going into a care home and seeing others in a worse state.hopefully one day there will be a cure and someones mam dad or grandparents will benefit from this .hugs to you petal xx

    1. Thanks so much Allison. I’m so sorry to hear that you have a relative with dementia too it isn’t always easy to cope with. x

  8. I help at a care home and it’s so sad to see some patients going through dementia.

    1. It is very sad to see. It’s a shame that no treatment has been found yet.

  9. This is a great post. It’s one of those horrific conditions that you try and deal with as a family, but often you aren’t able to give the care that the person truly needs, and I agree sometimes a care home is the best place for them to get the best care.

    1. It can be as we found out as lifting them to take them to the bathroom or to wash them can be a struggle in itself.

  10. I had the call everyone dreads last week – my elderly loved one is in hospital and is terminally ill with the dreaded C (12 weeks left). As we live miles away I do not get to see my father figure as often as I want and I know his dementia has been getting worse through our conversations. I used to work with alzheimer and parkinson’s patients so it’s nothing new to me but I was absolutely heartbroken when he watched a video my children had made for him on my phone and he didn’t recognise them….but he does remember them when they were small. He completely recognised me, although he had forgotten that I had children for one brief moment and he couldn’t remember my husbands name – but the staff said he perked up when i was there and he ate well and was happy. I’m now way back at home and wishing that I was closer but we have GCSE’s on here….. I’m not sure which is worse – the dementia or the C.

    1. That can be heartbreaking. I’m so sorry to hear that he didn’t recognise the children.

  11. I wrote about dementia not so long ago – it’s something I truly believe as a society we need to focus on more and do better to help those suffering. great post lovely! H x

    1. Thanks so much Harriet. It is something we need to do more to address. I know a lady who struggles to take care of an elderly relative herself as she has not financial support and it really takes its toll.

  12. I don’t have anyone in my family nor have I had someone but I’ve seen friends families being torn apart by it. Its awful x

    1. It can be very difficult to cope with something like this.

  13. It is heartbreaking to watch, during my last year of university I was a carer for the elderly and one woman had dementia but would refuse for anyone to do anything with her apart from me. She hated being washed, would be verbally abusive but for me ( I had to tread lightly) but she would begrudgingly let me do my job. One day she was extremely hysterical and was hallucinating that her husband was a murderer and I was his demon accomplice. It took me 40 minutes to get her out of bed and it was only because I asked her husband to leave the room that she agreed. Anyhow I got her into the bathroom and went to wash her and she got physically and verbally abusive at one point she had her hands round my throat because she thought I was someone else. I never worked at her house again, I felt sorry for her but at the same having been abused as a child myself anything like that puts me in panic mode and I was having severe anxiety and panic.

    1. That must have been awful to experience. There are different levels of this disease and it seems this ladies was quite severe. Sorry you had to go through that.

  14. Such an awful cruel disease to deal with, I don’t wish it on anyone.

    1. It is horrible and hard on all the family.

  15. I don’t have first hand experience with anyone with dementia however I’ve read a few fiction books based around the topic which I have found very interesting.

    1. Be thankful it’s not nice to see a loved on with it.

  16. Sorry to hear about your gran. I do worry about the state of care homes as it was just on the news the other day that half of them in the South East are not up to standard and my parents found this out when they searched for one for my grandmother!

    1. There are many of them that I would be concerned about taking a relative too that’s for sure.

  17. We did go through this with a family member. It was really tough. You really do need a network of supportive people.

    1. That’s very true the more support the better.

  18. This brings back a lot of memories of my father in law. It is such a terrible illness and one I never wish to go through again x

    1. It is awful to see others going through it, I don’t blame you.

  19. Dementia is such a heart breaking condition and so hard for those suffering and the family around them. Posts like this are so important to raise awareness X

    1. It is an awful condition to have.

  20. I think helping out in a care home is a great way to volunteer. I used to do this and it was so sad to see the elderly people, some with dementia, with no other visitors. I’m sorry you had to go through this yourself, it’s horrible to see your own family in this state 🙁

    1. It is awful to see but care homes can really make a difference to all when you find a good one.

  21. It’s not nice seeing someone you love suffer from dementia, but the best thing you can do is support them! I think it’s great that you’re trying to raise awareness!

    1. The more support they get the better. It isn’t always easy though and you do need help.

  22. my grandma has it and she doesn’t remember me whatsoever which is sad. i guess it also due to the fact she’s in another country and i only see her every few years.

    1. That’s such a shame. Depending on the dementia’s progression seeing a person regularly can help with recognition.

  23. Dementia is such an awful disease for the people and their family too. There seems to be such a stigma around care homes which is a shame as it can be better for everyone involved.

    1. It can be better although some of these care homes are not up to standard.

  24. I have had first experience of dementia – Not something I can really talk about even now. Just the worst possible disease and one that people still make jokes about – There is nothing good about a ‘senior moment’ joke.

    1. It is awful and I wouldn’t wish it on anyone.

  25. We’re making this decision at the moment for my grandmother, she’s always been so adamant no matter how bad she got she didn’t want to go into a home but I don’t think we have the choice anymore. She can recognise us for moments at a time but she can’t dress or feed herself at all. We want what’s best for her and also to carry out her wishes but there’s only so much we can do that’s in her best interest. – Heartbreaking really.

    1. It’s an awful thing to go through but you need to look at what is best for all involved.

  26. Dementia has got to be one of the worst illnesses to have. It makes people completely unrecognisable. So sad 🙁

    1. It is awful and not always easy for loved ones whole are caring for them to handle.

  27. My Nan had dementia and it was so difficult as her personality changed. She had been a professional cook and it was heartbreaking when she couldn’t remember how to make her favourite recipes and got so upset.

    1. That must have been awful for her and for you x

  28. Dementia is so cruel, I’m sorry you had to watch your grandma go through it.

    1. Thanks Laura. It wasn’t easy to see her deteriorate. I wouldn’t wish it on anyone.

  29. My heart goes out to anyone in this situation, I’ve been there myself xx

    1. It is very hard to deal with.

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