Well, my name is Kate Swaffer
I am not very tall
My hair is short and slightly greying
Very fine hair that I prefer is blow dried every day to give it some shape.
My husband and two sons are my best friends
And I am lucky, I have other special friends
Many new ones as well
But unless you are online you won’t ever know that.
There is so much more to me than those simple facts
The loss of babies in utero, a partner to suicide
And the disappearance of friends and family since dementia
All of these things and more will colour some of my days
At times they will all have an impact on how I feel
On how I might ‘behave’ on some days
They may make me cry
Since dementia it is not always possible to stop crying at will
That does not mean I am depressed
Or need an anti depressant
It is, quite simply
An expression of life, loss, love and grief
I have painful arthritis and chronic neuropathic pain
But, I prefer not to use pain killers,
Instead using Mindfulness
And Meditation to manage them.
What food do I like to eat?
What time of day do I like to eat?
How often do I shower?
Do I like to get up in the middle of the night?
Have my musical tastes changed?
What if I have forgotten I liked the music that others recall me listening to?
Do I remember my family and friends?
What are the clothes that I like to wear now?
What medication am I on?
Do I take vitamins?
How often do I exercise, and is walking a big part of my life?
Oh, yes, of course it is.
I walk to the kitchen, the bathroom, the clothesline, and to the shops.
And I walk for exercise and leisure.
Do my children know anything about my sex life?
What are my hobbies?
Do I like sharing meals with strangers?
What ‘activities’ do I like?
Would I feel locked up without a key to the front door?
Will living in an institution make me feel like I am in prison?
If I am there, will I like the decor?
Will I like the layout of the rooms?
How will I like sharing my life with complete strangers?
Can I arrange flowers or do some gardening?
And for anyone who might be admitting someone to a dementia unit
I have one final question
When you think about who I am…
Would you like your freedom to be taken away, and to be locked up?
Huge hugs to you Kate Swaffer. You are amazing, are teaching me how to be the best nurse for people who have dementia and I am continually grateful to you Kate for doing this as you help me so much to be the best person I can be for each and every person entrusted to my care through no fault of their own or their loving families. Sending lots of love to you, yours and everyone with dementia. Each one of you is unique and amazing. Stay strong! Love and Kisses, Paula xox
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Thank yo Paula… and BIG hugs and kisses to you too xoxox
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Your message is clear. One is still the person they are, no matter what the diagnosis.
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Absolutely dear Michael… just as a family care partner is still the person they were and are. I suspect many get ‘lost’ in that difficult time consuming role, due to the emotional and physical challenges. It is wonderful you seem to have had the ability to retain the very great sense of YOU. Make sure you write about how you achieved that, in your book please! xoxox
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Sending hugs to you …. this is such a sad topic …. well, it makes ME incredibly sad 😦
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Sad, yes, but perhaps only because a great number of ‘care’ homes do not consider most of these things… 😦
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What a wonderful post!! I may not “know” you, but I love “the you” that you have shared with us.
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Love you too dear Mary xx
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I missed a bit out I am also small with short greying hair which is blow dried every day just a few more things we have in common. Also I now have some more special friends which I count you as one. Take care dear friend xxx
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now that really is a bit spooky! xx
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Hi Kate every time I read more of your blogs I feel as though you are my twin only kidding you have had to deal with a suicide so have I. You feel that if you were to go into a care home you might as well be in prison, well here in the UK prisoners get treated better than people in care homes who have to pay large amounts for the priviledge. Arthritis causing more problems to me at the moment than my memory, as we can laugh about the silly things I do but I can’t laugh with the pain of arthritis. Tears like yours just come for no reason I don’t know why as I used to be quite strong minded. Also the people who don’t believe I have dementia because I can talk quite well but they don’t see the struggles I have getting dressed, doing my hair having a shower having to let my husband do things for me what are quite personal. Yes they don’t see that. Feeling sad for the retirement we planned but now are unable to do. Sometimes I wish they could be in my shoes for just one day especially the government who are cutting services for the aged and vulnerable people. They would soon see how much help both the person with dementia and the carers need. Sorry I’ve waffled on this morning but you are the only I can share this with, most people don’t really won’t to know or care that much. Take care chin up xxxx
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Haha, perhaps we are Lesley! Amazing the similarities… hope we might get to meet this year too! xox
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I feel your comment is a little unfair as I have struggled with this heart-breaking decision to put my husband of 37years into a care facility. I am certainly not abandoning him as I know he does not deserve this as he has been my best friend since I was 17, so hard to see him advancing with this disease. I do wish you well Kate & it seems like you have a wonderful support group amongst your family & friends. Take care Jean xo
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Hi Jean, it is not meant that way… I guess it is meant to be something I would want the staff of a facility to ‘listen’ to. We have had to place three family members into dementia care facilities, and had not choice, and still feel heartbroken about it… sending you huge hugs. I cannot imagine after being married for 37 years how hard that must be, but I also understand the need to do so having done it. xox
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amazing words straight from the heart my darling freind, stay strong my dear, tears and all. love you to the moon and around again, hope to see you soon, love you xxxxx
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Hope to see you soon too darling Jac xoxoxo
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Great post!
I don’t do WordPress so this is the only way I can respond to your blog.
Eileen x
Sent from my iPhone
>
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Thanks Eileen… and no need to do WordPress! Your comment is perfect as it is xox
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When i think about you I think of advocate, supporter, volunteer friend, girlfriend all round great person. Dementia is hard on all, it is a changing terminal disease that no one but those diagnosed can actually get. We are going through this with the FIL, the MIL is in denial and tells him she can ‘teach’ him how to concentrate to pass the test, I was at the last assessment and am saddened and shocked at his lack of ability to sequence and follow directions . To look at him, talk with him and walk with him it appears there is nothing wrong, but underlying brain function is not there.
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I feel your love and friendship, as well as your concerns and sadness for your family. It is of course, easy to look as if you don’t have dementia in a short space of time, sometimes even whole days, but it is when you get ‘behind the scenes’ or go to appointments that it is obvious. I do recall the first time Pete sat in on some neuropsych tests, and was more devastated than me that I could not do simple things like spell or count backwards… it is a tough gig indeed, but not worth rolling over and dying for straight away! xox
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How amazing Dom introduced me to you Kate. I am so glad I’m getting to know you both. You have made such a differnce to our lives. Sincere thanks for being there. We will meet some day soon.
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Thanks Paul… and sorry I’ve been quiet lately!! Jet lag has something to do with it of course, but a few other matters i the way as well! Life does have a habit of getting in the way sometimes haha
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Kate – I love your words. You are who you are, and you feel what you feel. Everyone feels differently to all sorts of things. I am struggling with having to place Steve into care, but I think I have now found the right place for him – just keeping my fingers crossed at the moment. I hope he doesn’t feel that his freedom has been taken away from him. He is still able to roam around in the secure gardens and is still able to do lots of things, just like you can, but he may take longer to do them, but he is still useful and needing to feel useful. I hope it is a long way off for you before you have to be “locked up” – let’s hope that it may not even happen for you. Take care of YOU, as I’m sure your BUB does. I will be in touch soon to organise a get-together. xxxx
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Feeling for you both Dom… I really hope the staff ‘really’ get to know Steve. Too often it is a 1-2 pager about likes and dislikes, that then sit inside the notes never to be seen again. Huge hugs to you both xoxox
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xxx hugs back to you too
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