I don’t even know how long it has been since my last post here. I guess a big reason for that was dementia changes, life being busy & maybe a huge element of fear to actually say it all out loud. I dare not read back and see how things were as there may have been some massive changes but at the same time I will try to convince myself that I shall simply be repeating myself here and nothing will have changed at all.
I guess I don’t know where to start either so I’ll try with today, though words are not coming as yet to explain how today was. It was different to a bad day, a vacant day, a tired day or an “OMG she’s had a TIA day!” Today was entirely and exclusively different to any I have ever shared with my darling mother.
Today was like (I imagine, I have never done it so forgive me if I speak out of turn, I mean no offence) spending the day with a deaf person. From the moment I woke mum this morning she just didn’t comprehend anything I or anyone else said. At first I assumed I was mumbling or talking too fast, too much detail etc. I adjusted my communication, and still was doing so when she went to bed, but nothing. She would ask how to help me, I would tell her & she would just stare blankly. Usually she would ask again, raise her eyebrows at me, just do something else or similar or simply leave the room! Haha until I’d say “I’m talking to you” which would normally be met with “I have no f***ing idea what you said!”
I’m not sure it’s the right time to share today. I’m sure it was just a rough day for her & tomorrow will be better.
Tomorrow she’s at Reflections. She absolutely adores this amazing Memory Day Centre & they really are AMAZING! I wouldn’t be able to find the words to express how big hearted & thoughtful these guys are. They do baking, painting, flower arranging, nail painting, singing, dancing, crafting & most of all laughing. Mum goes now 3 days a week. When I pick her up we stop in the hallway to put on her coat, then a minutes walk across the gravel to the car. I ask about her day. She has absolutely no idea what she’s done, only that everyone was lovely and she made people smile. It has become her mission in life to make people smile & laugh. Her jokes may often no longer makes sense but she sure knows how to make people laugh regardless.
The thought of actually not remembering what you did just 10 minutes ago is just mind blowing to me, I don’t think I will ever get my head around it. To ask the same question over and over but retain no memory of asking and no memory of an answer. To be constantly asking when in the car “Where am I going?” “Where have I just been?”
Mum still dresses herself although needs help with position seams on shoulders etc. She struggles with matching as she seems to be colourblind. Normally she would wear on top a vest, long sleeved T-shirt & a blouse but when we got to Singing for the Brain on Tuesday I realised that there was no vest but 3 long sleeved T’s!! They are all the same style so I’m not quite sure how they fitted over each other.
I can hardly get her to eat anything that isn’t sugar or chocolate now. Most common with Frontal Lobe Dementia, which she doesn’t have, but she has always had a sweet tooth & they say dementia can make it worse, so maybe any type. She can eat a packet of chocolate wafer biscuits through the night (18 to be precise) but give her something healthy, savoury…….Today she had half her lunch, then half of that for dinner. I’ve stopped worrying about it and her GP is involving a dietician to address how important it is.
One major change has been her ability, or lack of, to help out in the house. Her jobs involved changing the bathroom & bedroom bins, helping with bed changes, dusting, ironing & dishes. She still helps with dishes but if there’s more than just cups & plates to wash then she will avoid doing it at all cost as the visual no longer makes sense, she struggles so much to identify objects these days. The bins now overflow. I leave them as long as I can to try and leave her some independence & feelings of usefulness but she either no longer notices them, can’t comprehend how to go about emptying them, can’t remember where the new bags are or thinks to do it but simply forgets by the time she’s left the room.
Bed changes are disastrous so I try and do this together rather than excluding her altogether. Ironing 1 sheet takes almost an hour. It’s so hard to find the balance between keeping them involved and upsetting them by giving them tasks they can no longer perform.
Mum and my best friend’s 12 year old daughter have been doing some serious bonding recently (so beautiful to watch) and one of the most bizarre things to come out of this is the fact that they shared a packet of Cheese & Onion crisps. Doesn’t sound bizarre to those of you who don’t know her but seriously….even salted crisp are too ‘strong’ (tasty) or salty. I buy the salt & shake crisps for her but she’ll rarely even manages the ‘strength’ in flavour of them unsalted! So for Sharon and I the fact that mum was eating them was unreal, we even had to buy another packet. A couple of days later I bought her the same. She took one bite, screwed up her face & spat it out, just like she normally would.
We no longer have the joys of the constantly humming Jingle Bells. (I knew there would come a time I wish them back). Now we have constant ooh, aah kind of noises, mostly sounding painful. This is constant unless she is talking & sometimes stops when she is eating.
Mum constantly interrupts as she can no longer (generally) follow a conversation. I guess being that she’s always been a chatter box she feels anxious to not be talking and so just interrupts with random comments or stories.
I have finally got her showering but have to remove everything other than the products she needs. I found her once almost washing herself with anti-mould shower spray (one which I sprayed in my eye once & ended up in A&E but that’s a whole other story & about me)!!!
Audio hallucinations are more common these days and mostly around hearing knocks at the door, phone’s ringing (unless our actually is, then she doesn’t hear a thing-well thinks it’s on the tv) or me calling out to her.
I still can’t take a shower or even a wee without her checking I haven’t fainted. I guess concept of time has been a fundamental change to things too.
We have lots of sentences being finished with noises rather than the usual random words. I used to post Deeisms on Facebook all the time but it’s more nonsense and noises rather than words now that don’t translate although we still try to laugh.
Well, so much more to share but I’m exhausted now & making this real, makes it feel very lonely, and I’m sure you are bored so I will enter one more post into the Deeism category and call it a night.
I hope to be more regular again with posting. Get back onto my awareness crusade. Thanks for taking the time to read. Please don’t forget to share publicly, as far and wide as you can. Still so much ignorance towards Dementia, it has to change, for all our sakes.