Love, memory and dementia

love-inspirational-dailyIt is on the ‘bad’ days that feeling the love of others makes all the difference, even though on the ‘good’ days it feels great too! On the bad days, when all seems doom and gloom, the open love of others, and the memories of that love can turn things around. I was lucky enough to spend a week away recently, with a substitute BUB, and an opportunity to meet ‘my imaginary friends’, and this friendship and love has been supporting me ever since.

However, I’ve been wondering, how does this impact on a person with dementia, if they can’t remember their loved ones, or the love felt and expressed by them?  When I was nursing in a secure dementia unit, many family members used to say they felt desperately sad their loved one could not remember them, often not their face or name, or even a glimpse of how they knew the person, and it always seemed much sadder for the family member, than the person with dementia.

Now that I’m wearing the shoes of the person with dementia, I’m not so sure… When volunteering in a nursing home a year or so ago I spent a lot of time with a lady who the staff said ‘was away with the faeries’ and remembered nothing! However, when I spent time with her, she ultimately was able to recall a significant amount of her past, including things like the features of her family, where she went to school, and even what she did the day before. The frustration she discussed with me about not knowing how she knew this information was acute, and she sometimes hit herself on the head… The thing that upset her the most was that she knew the information was in there, but most times could not easily retrieve it.

After a few months, this lady also seemed vaguely aware that if the staff had spent more time with her, her daily experience would have been significantly better, and so often became more frustrated with them, angrier, and ‘less compliant’… She was then treated with more medication, rather than more time. In a way, I felt guilty for having spent time with her to bring on this awareness, even though she was not able to voice it, and instead acted out. We are still a long way from improving these sorts of experiences for PWD, because of understaffing, and lack of time, and our own understanding of the frustration felt by people with dementia, and the amount of insight many still have. She stood most days near the front door, waiting for the daughter who never seemed to appear…

I am delighted to have friends all over the world, including the ones I have never met, and my childhood love of writing letters and having penpals lives on through the internet. The wonderful thing about the internet is the access to social media, emails and blogs, and the ability to save and then retrieve the ‘conversations’. In this way, I feel that love and memory are in some way preserved, and the person living with a diagnosis of dementia is suitably blessed if they are at all able to access the internet.

11 thoughts on “Love, memory and dementia

  1. What a wonderful thing to do, Kate-volunteering in a home-well done and good on you! Do you still do that? I would like to volunteer in a resthome one day too-sounds very interesting. You are so right, people with dementia have bad days and good days. One of the things i have learnt during my Grandad’s journey with Alzhiermers is that, as there Dementia progresses, you have to lower your expectations of what you think is a “good” day and what is a “bad” day. When my family says my Grandad “is in the fairy’s” or in “la la land” or in “ga ga land”-that means he is having a really bad day, but, he still remembers things. He still know some things. Don’t you just get so sick of caregivers and people who work on a rest home say, they know nothing, yet they know something-how frustrating for there families, friends, companions, and people who visit them. I showed my Grandad a few funeral booklets of people who he really liked who have passed(they have a collection of funeral booklets in there house), and he knew who they were and really enjoyed seeing the photo’s of them-it made me smile. He loves looking at two photo books which were created quite some time ago and he remember most of the people in them-photo books have been a huge benefit-i feel he is soooo much better mentally, when he looks at the photo books compared to when we take him out. When he remembered who some of the people were, it was like having the “old” Grandad back-something i never expected to happend during his journey with Alzhiermers. I suppose now, we should spend more time looking at the photo books with him, rather than taking him out. It’s so lovely having those photo books to look back on, and to see some photo’s of my Grandad in his younger years. That lady you mentioned, Kate, knows sooo much more than the staff(or anyone)anticipated.


    • I still volunteer occasionally in one though a lot less often as I now find it sad since my father in law died from dementia… it brings back the sadness and loss. But I volunteer doing lots of other things and find it keeps me grounded and less worried about my own issues! Hugs to you and your grandad


      • I totally understand how you feel, Kate-it sure is sad when you have it, and that your father-in-law died from it-it probably reminds you of negative memories. Good on you volunteering for other things, and yes volunteering definetly does give you a purpose.


  2. Dear Kate This is such a tricky one. (They’re all tricky if I’m honest, we still don’t know nearly enough). I was reading an article about the fight for Scottish Independence the other day and it said that if we become independent, it doesn’t negate the time we were British and part of the UK. That past will not change. Even when someone with dementia remembers less, the past still happened. I wonder how long it will take before we double the staffing levels in care homes. Even though my mum is less aware of me than before, she likes waking up to see me there on the rare occasions I visit. My sister reacts far more to the care home staff than she does to me which is hardly surprising. They are with her every day, whereas I visit irregularly and stay only for a short time. I also read a good article on the prevalence of staff being risk averse which stops residents taking part in activities. Again this must be partly because there are not enough staff on hand to support residents. I wonder if we could recruit volunteer extra bodies for this. Back to research! Alison x


    • Tricky… perhaps that is the understatement of this century! Keep at it my friend, perhaps one day research will make a difference. Recruiting volunteers is one thing being considered by many in this country. xx


  3. I am really fortunate that i have a job that allows me to spend hours sitting with PWD in a residential dementia unit. We have conversations, a laugh, a cup of tea together and just spending time does make a difference to behaviours, yet as you pointed out it is so hard for families to do this. Thanks for the wonderful post.


  4. I often sit in silence with my Mum, so sad that she seems to have no memory of, for example, my father to whom she was married for nearly 47 years. I have comforted myself with the thought that if she doesn’t know what she doesn’t remember, it won’t pain her. But, as you say above, I’m not so sure that is the case. All we can do is reach out and continue to show that open love.
    Thank you, as always, for sharing your thoughts.


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