'I'm ready. It's time to move from being 24/7 care givers to part-time.'

An overseas reader, 'Lickety Glitz', discusses her decision about transitioning from a full-time care giver for her mother with dementia, to part-time.

Lickety Glitz's mum

A couple of Saturdays ago, I cried myself to sleep. I cried because Mom's increased progression has coincided with my decline of care giving prowess. In the last few weeks I have snapped, I have mocked, I have YELLED - at HER - my lovely, ornery, crazy-pants mother.

My patience has not just waned, it is depleted. My frustration is not of the moment anymore, it is an all-day thermal nuclear rocket, barely doused into submission.

In the last month (more times than I care to admit) I've gone to bed hating myself, knowing a stranger would have had more compassion and understanding for Mom that day than I was able to muster.

The straw that broke this camel’s back

What preceded Saturday night's crying jag was a day where I derided her for not taking a walk on the beach with me. In a throwback to my teenage self, I sneered at her. 'Oh, you don't want to walk on the beach? Of course you don't.

Well, by all means let's go do something else you don't want to do!' Later, I stormed out of a museum when Mom suddenly became dementia-fearful, leaving her confused and lost.

And finally, I hollered at her for being on top of me all day. 'All I want is five minutes to myself! Is that too much to ask?' (To which my own brain immediately screamed back, crashing around in my skull, 'Yeah, it is to your dementia mother, you jerk!') So, I cried. And I cried. And I cried some more. Until I slept.

Sister support

The next thing I knew, my sister - who shares care giving responsibilities with me – woke me up. I immediately began blubbering again.

And then I said it:

'I can't do this anymore.'

Inconceivable. But there it is. The words were out. The feeling that had been roiling around in my gut, flaming up at the worst possible times, subsiding only to continue its noxious fester, was said out loud and acknowledged. My sister comforted me, said that she too felt it was time to change the situation, but if I wasn’t yet ready, she would continue to be my full-time care giving cohort until I was prepared to revise our care partner roles in Mom's life.

My sister and I have never been foolish enough to promise each other that Mom would be at home until the end of her life. Such a vow adds pressure to an already stress-heightened situation. It stifles honest communication about where we're at and how we're doing. However, it has always been our deeply desired goal. I so wanted to continue giving her a sliver of peace in this anxiety-riddled waltz to the end of the ball, but that night I realized I can not.

Changing of the guard

My sister and I are both exhausted, stressed, financially flailing. These are all things we've worked through before, but with my growing level of disrespectful care I have to stop before I hate myself forever for wounding an already dementia-embattled Mom.

I'm ready. It's time to move from 24/7 care givers to part-time. It's time to begin investigating and vetting memory care facilities, of which we have excellent options in our area. It's time to start making all new mistakes and having all new successes as we move forward in the best way possible for the three of us.

It's time to support our princess in a new environment, make quick work of new villains ('Are you serving my mother peas? From a can? Not on my watch, you fiends!'), pester and harangue the crap out of memory care professionals whenever we see fit. It's time to learn how to engage Mom in her new surroundings while retaining her involvement in her already established kingdom. It's time to storm new castles.

Next steps

Dementia Connect support line
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I too am struggling with the idea of putting my Mum into care. She is somewhat immobile, partially sighted and with dementia. My husband and I work full time. I either work from home or my husband has a job where he is home or takes her to various building sites in the car - we have no help and I have that "just cannot cope anymore" feeling. I am struggling with a host of emotions from feeling Ive failed, desperation, wanting relief but she doesnt want to leave our home and is making me feel so guilty that I just want the best thing for her. How do you cope? What do you say to them? How does it ever get better?

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Hi Jen, I'm very sorry to hear about your Mum. We'd be very happy to offer you advice and support with this. If you call our Support Line one of our advisers will be able to help.

Our Support Line is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.

Thank you

Alzheimer's Society

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Thank you for sharing your stories. My mum has dementia and has declined quite quickly in past few months. I am struggling with keeping her healthy (she's recently started messing up her medication) and keeping her clean (she's recently become incontinent). This is a scary illness for us as her family to watch but must be even scarier for her in her lucid moments.
Her decision making ability has resulted in very odd situations that I need to step in and resolve.
So I am now wondering what comes next, how will my mum cope with further changes and how will I know what to do. Uncertain times ahead, I am sure.

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Oh, Claire, that is so awesome for you all! Congratulations. Clearly your continued involvement also adds to the successful transition. We actually had the opposite experience - we brought Mom back home after five weeks in memory care. Oh, it was a wild ride!

I've come to the conclusion that there is no right answer with dementia - our best bet is to be as flexible as possible. If it's working, don't mess with it! If it's not, try something else. If nothing else, this damn disease keeps us on our toes.
~ Lickety

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My mum always insisted that she would not be put in a home & I promised her I would keep her at home as long as I could. My sister & I did this with the help of carers until at the beginning of this year it became apparent it wasn't working for her (she detested the carers). Luckily we found a wonderful care home at short notice. She went in for 3 weeks respite & has stayed ever since. It has not been problem free - she wouldn't let anyone except me wash her (she was the same at home) & she had some falls & other issues, but she never once asked to go home (she often asked to 'go home' when she was at home). She is now very settled & is always saying she likes it there. The carers are wonderful, the food is good (she is vegetarian & was a very fussy eater, now I am amazed at what she will eat). I can't thank the staff enough & I know deep down I have absolutely done the right thing for her. She is so much better off in the care home than in her own home. I still feel guilty, but I see her almost every day & I know she has someone to keep an eye on her 24 hours a day who knows what they are doing. It is impossible on your own to care for someone who struggles to sleep, walks constantly, is incontinent & all the other challenges that dementia brings. I know there is more to come with this horribly cruel disease, but for the time being my mum is doing really well & I know I have made the correct decision to ensure she gets the best possible care.

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Your message left me with a smile about your mother's lovely, respectful remark to the physician..what a special lady she must have been! God Bless You for everything you did for your mother.

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Christina - It sounds like you were such a huge comfort and help for both your parents. It's not the easiest job helping someone to the end of their life, but it has it rewards, and it's funny moments! Thank you for sharing yours.
~ Lickety

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My parents lived in Scotland, I had moved to Lancashire when my mam started with Alzheimer's. I first noticed her confusion over making sandwiches for a trip out when she and dad joined us at a friends caravan, I commented on it to my husband but it didn't seem too bad. My daddy coped for years with mam's gradual deterioration despite my pleas for them to move down to us. We had plans drawn up for a granny flat but he said no until1999 when he suddenly told me to sort it out by which time we'd spent our money on work on the house. I found a nice flat in a communal sheltered scheme and they settled in well. I actually got the job of managing the scheme and it worked out very well as I could help daddy and sort out anything they needed, but eventually, after a psychotic incident, she had to be admitted to hospital where she was left alone in a day room as they said she couldn't walk unaided despite me telling them she could at times! She fell and I knew she'd broken her hip but it took them 2 days to admit it. She had it repaired but apparently fell off the operating table?? Anyway, after weeks in the hospital then in the community hospital and eventually in a step-down bed in a local nursing home, it was decided that she needed to be admitted to an EMI unit. I managed to get her into the nursing home which was very handy for my home and I managed to visit most days and could help with her feeding etc. I needed to work from a financial point of view but I was able to help my dad as I had to live on site. My mam died in October 2006 but my poor daddy died 6 weeks later, I think of a broken heart. One very funny incident springs to mind, we were seeing a psychiatric consultant and he asked mam who I was, she answered "my daughter, of course!" he then said "and who am I?" my lovely mam turned to him and said "I don't know, we haven't been introduced!!" I had to laugh, so did he.

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