Diary of a Caregiver: Dementia

Dementia care at home

I’m going through a roller coaster.

Not been sleeping well… too many memories, too many emotions of Mum bubbling inside me. She’s totally lost in her own world now…it went downhill so quickly and so bewilderingly fast for five years it was slow and quite plateau but suddenly in the last couple of months she’s totally deteriorated….
To see her so defenseless and gone forever…
I keep yelling out “ mama, mama” in her ear but I think she can no longer hear…
I’m grieving so deep within…
I know it will level out … this phase, the acceptance will come.

I now lift her up from bed so that she can sit up on the bed (her feet on the floor).
I sit behind her in the bed so that she can rest her head and back on my chest. I need to make her sit up so that the phlegm etc stuck inside her throat can travel down and so that my Maid can spoon feed her while Mum rests her head on my chest. She keeps shaking her head but does gulp down the liquid diet we feed her … sometimes it just dribbles down her chin and I keep wiping her mouth and chin because I know how sensitive she was to her body hygiene.

I keep rocking her as if she is my baby and croon along the Gurbani which I’m playing throughout the day in her room.

I keep kissing her and sending her my love because I know the vibration of Love goes deeper than Alzheimer’s. I need to tell her subconscious that she’s in loving hands… I want her to leave this world with that feeling of being loved right till her last breath. I get her massaged twice a day with oil ( virgin olive oil and sesame oil and coconut oil…) Ayurveda recommends that oil is good against Alzheimer’s which is a Vata Affliction. Till a day before I know through her facial expression that she loved getting massaged…. now her facial expression doesn’t change much even though I know she loves it. I remember as a kid she used to ask me to press her legs and even stand in them … and when I’d refuse she’d bribe me to do it for her and this became a game between us, “Ok, for ten minutes I’m going to charge you four annas”.

One silver lining of her present state is that she no longer resists getting somebody to massage her or undress her and change her diapers. She refused bathing for weeks. But now I get the Maid to use heated wet towels to rub her body once a day, to powder her and keep her clean. I know she loved sweet fragrance… I think I’m going to get scented flowers. There was this jasmine and other tiny white fragrant flowers she’d dip in water and keep by her bed and even wrap a wet hanky around them and keep them by her pillow when we were kids and we’d go for walks in the evening and she’d pluck those flowers and say she’ll place them next to her bed when she sleeps….I’m going to get them.

Her body is so soft and fragile and so sweet and warm as I rock her in my arms as I sit behind her and she leans on my chest and sometimes I wonder who is needing who more… is it her or is it me….

I feel so nice to be next to her for too long did we not hug and cuddle ( she used to love cuddling me and I used to love being cuddled by her even when I was a boy)… it’s when I’m in such close contact with her do I realise how starved I am of love myself…I cry often nowadays and slowly and steadily, as I begin to level out with my emotions at the back of my head is this lonely decision I need to make … when do I let her go…. I’m not too sure I want her to be fed through tubes… but right now I’m not going to take that decision.

I’m going to grieve, I’m going to cry, I’m going to love her and hang onto all this. This is too precious and soul crushing and soul enriching at the same time and then there is my dad to look after. He’s 95, with Dementia, but still lucid and able to physically fend for himself. I know I’ve been neglecting him…. God, I need to look after him as well. Thank God, I’ve restarted his evening walks ( my two maids take him down to the park and take a wheelchair along). He sometimes walks with his stick, sometimes sits on the chair…slowly I need to start giving him more attention as well .

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