The things that make you sad

So….when asked where the cat Emily is (who died 30yrs ago) I get away with saying “she’s probably out & will be in later”.
Now it’s the dog (who died 25yrs ago), but saying she’s out is distressing so I had to tell the truth, which was worse……..

It’s not all funny comments.  This morning Mum said “Sometimes I want to cry because I’m so empty!  My head used to be full of things & now it’s empty & I’m a dickhead!”

It doesn’t matter how much you laugh or distract.  The fact remains  that I can no longer have a conversation with my Mum, tell her about my day or expect her to make any sense.  It’s worse than living alone.  It’s like the loneliness you can feel in a relationship that no longer works.  Like you are trapped in a sad & isolated bubble.  She expresses nothing but love & gratitude (mostly) & gets back irritation & rolling eyes (quite often).  Each day I think I’ll do better tomorrow & tomorrow I’m just more warn down & sad.  Heyho!

When you live day in day out with someone who is mentally deteriorating it can be hard to see how fast it is or isn’t progressing.  I’ve realised a huge marker for me is when seeing others.  Like taking Mum to her Podiatrist for the first time in 2 months & Seeing how different she was to how she normally is with him.  Or seeing her GP about her, but without her (at his suggestion) because it’s easier & him expressing great sadness at how different she is.  Or her Singing For The Brain teacher telling me how frail she looks & how much she’s aged.

To hear my Mum always say “Was I okay today? Did I behave alright?” breaks my heart.

Repetition

One of the most frustrating symptoms of dementia for a carer, family member or friend to deal with is the repetition.  Mum has always been known for repeating stories, for as long as I can remember, (maybe it was actually early onset) but it’s not just the same stories over and over again.
Each morning I get asked 3 times within half an hour “Did you sleep well?”.  It makes no difference whether I repeat with the same answer or something completely different.
I’m asked what’s happening for the day & once she’s told, she’ll still keep asking roughly every hour.  Either the same question or “Where did you say we’re going?”  “Did you say our appointment’s at 2pm?” (For some reason most ‘times’ get moved by half an hour in her memory.  I’m asked every morning what my coffee is, what’s in my breakfast bowl & where is her memory board when I prompt her to go to it.
At the moment I’m asked each day when Easter is?  I tell her it was last weekend & she still has an Easter Egg to eat.  This is happy lost memory as she gets excited about her chocolate egg all over again!  However, questions like these are gutting because you can see in her eyes that she’s upset knowing that she must have known when it WAS Easter & so how does she now not know when it is?
When arriving home from somewhere I’m usually asked a few times if I had a nice time.  Occasionally if I keep the response the same, she will say “Oh yes you told me, sorry”.  Then she looks really upset because she knows it must be annoying.  I hope I’m improving with my facial expressions & tone of voice in not letting her know, at least too often, that I’m irritated or frustrated.  It’s so unfair that you can’t help it annoying you but she can’t help it!
The stories that mum shares are starting to change as she forgets details & gap fills with other things.  I used to correct her but soon understood that this only causes distress as in her head the memory is correct.  I’m desperately trying at the moment to get mum to fill in a Life Story Book to hold on to some of her memories.  I want her to get the stories in it before they change anymore.  I don’t want to write them myself because I feel that one day in the future she may be reading them & if they’re not in her own hand writing then she may be disbelieving of them being true.
I try to remind myself amongst the fairly constant repetitive questions & the constant humming, (I’ve not told you that mum hums constantly, literally-even while she’s eating-random tunes, normally just 2 bars and won’t change for about 6 months) that one day she won’t be able to repeat her stories, one day she won’t be able to ask questions, hum or make a any contribution to a conversation.  This thought is absolutely devastating as Dee has ALWAYS loved to talk!  She still does but her response to what you say is now often some random past memory that has nothing at all to do with the conversation you’re having.
The other thing that she still has, which can be the first thing for someone with Alzheimer’s Disease to lose, is her sense of humour.  Her jokes may often be inappropriate or simply make no sense at all, but she still mostly recognises a joke when you make one.  She also, of course, has a great laugh with me over her ‘Deeisms’.  I ask her permission to post them on Facebook to spread the laughter & she knows about my Blog, though I’m not sure she has the capacity any longer to understand what this means.  She does trust me implicitly though, thank god, so I don’t concern myself about this. She always says “Laughter is the best medicine!”
I hope more than anything/everything else, that her sense of humour is the last thing to go.
Clothes  that I am loathed to wear because of the writing they have on them that invoke the same questions or comments no matter how many times they are seen.
Adverts on TV that invoke the same thoughts, comments or questions every single day.  I find myself cringing because I know exactly what is about to be said & my response to it is neither recognised nor taken on board to alleviate any stressful emotions that may have incurred.
Repeats of TV shows (Yes Judge Judy mostly) that you know will bring certain comments, judgements & noises no matter how many times they are seen.  It IS fascinating that these things remain identical regardless of how many times they are repeated.