Deciding how someone else should live their life has been something I have grown over the years to realise is not right or fair. We should all have the right to be where we want to be, when we want to be there, not out of obligation but because it’s where we feel right, to be true to our own hearts and let others be true to theirs. This understanding may now be to my detriment as I find myself trying to make big decisions on how mum should spend hers, what she should be doing, when and with whom.
This weekend has made me realise that she functions much better at her day centre than at home. When at home with no appointments (“Oh good a day off!” mum always says) she’ll basically spend the day backwards and forwards to bed, or like this weekend, pretty much in bed from 4pm Saturday until 10pm Sunday. Then her body aches, the day and time are more confusing, she eats less good food and more chocolate, her lack of routine creates even more confusion it seems. I’m trying to decide on a balance, the right thing for her, her mind and soul, a decision that I don’t feel I have the right to make. I guess I do mentally but not emotionally. She loves to be around me, misses me when she is not and who am I to take away that precious time from her, from me. But is a more stimulating life, more social activities actually better for her.
It’s been a pretty sad weekend where mum is concerned. I would like to think that she was just feeling tired or poorly and that this isn’t another decline but I think I’m kidding myself.
Delusions and paranoia seem to be all of a sudden quite frequent. Especially relating to people ‘not liking her’ and her feeling that she needs to hide in her room when I have visitors in order to not intrude. She has always insisted that we have a deal where by, if I have a friend round and we want to talk privately that I’ll send her to her room. I constantly assure her that I have my own room for privacy, the kitchen door shuts for privacy when she is in the lounge, and under no circumstances would I ever send her to her room. It would appear that she has taken matters into her own hands and decided to do that regardless.
The weekend has been very confusing for her. Finding the words to complete a single sentence has consistently evaded her for the last 3 days.
She asks over and over again where we are going, when we arrived at our destination, a post office, she told me I ought to let them know that I’m here otherwise the doctor won’t know that I’ve arrived for my appointment.
Sunday morning I found a pair of scissors on the bed in the spare room that had been taken from a box of toiletries and the like. I couldn’t work out why they were there until I later found an opened pack of 3 soap bars in her bedside table (mistaken for chocolate but luckily not bitten in to). A giant eraser was on her bedside table from the spare room too, another mistaken identity on the hunt for chocolate but without teeth marks thank god.
I’m realising that time at home is of no benefit to her now, maybe even is detrimental mentally & spiritually. Her day centre (3 days a week at this stage) makes her brighten up, make an effort, laugh, dance & smile and her day is full of tailored stimulation.
At home, unless we’re at appointments or out & about, she just spends the day in and out of bed. Not sleeping, not really restful I feel even though she is resting. It’s incredibly hard for me to motivate her to do anything but for anyone else it’s easy because she wants to please and help.
She gets upset at home when I do any chores as she complains that she’s useless, can’t help with anything anymore and is a pain. I try to involve her in tasks that we can do together but it generally ends in tears as she struggles to follow instructions.
I think she cried 5 times on Saturday. Unable to help in the house, trying to play a game that made her jump and burst into tears, a colouring book that was ‘wobbling’ as her eyes fight Macular Degeneration, knocking her hand on the kitchen bench and berating herself through tears for being such a ‘dick head!’ and in sheer frustration that she couldn’t find her words to complete a single sentence correctly.
At her day centre she would have just smiled at each of these and got on with it.
Her day centre is exhausting, no siesta, but she sleeps no better on those nights. She comes home saying she didn’t want to go, she has no idea what she’s been doing or where she’s been but she knows she had a lovely time and she feels “6 foot tall & 10 years younger!”
Home is exhausting on appointment days but the others are just chilling & in & out of bed. I used to think that this was fine as she’s tired, has a day off, let her do what she feels like. Now I’m wondering if that’s not something that would be important to her anymore as she doesn’t know whether she had a day off yesterday or was busy, today even. Maybe having that feeling from the day centre is better for her soul than the ‘days off’ that she just quietly waits and hopes to die. I don’t know. I just know that it was never my intention to be deciding on someone else’s life, stopping them from choosing and not allowing them to be free. This part of the responsibility of my caring role, I don’t want.