Holiday Season Guest Post

Thanks to the lovely guys at LivHome for asking me to do another guest post, if you’d like to take a look you can find it here:

http://livhomeblog.com/caregiver-holiday-highlight-kirsty/#sthash.HaxAwNAf.dpbs

It’s a small interview about the holiday season, and is something I was going to go a bit more indepth about nearer the time. So for now, enjoy the bitesize chunk 🙂

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Carers Guilt

Constantly Trying and I often ramble on Twitter about life, so when I was offered the chance to collaborate on an article for Lee, the lady responsible for Dementia Challengers  I positively jumped at the chance.

You can read the finished product here: read but after chatting with Constance, we both thought you might like to know how we got there. We both wrote our own versions before reading each others, and then merged them together.

Guilt according to Me:

This is something that I covered in my blog, but it’s not something you see talked about often. I suppose that despite all feeling guilty for one thing and another, we still feel ashamed of the things we feel guilty for.

I feel guilty whenever I leave Nan to meet up with friends, the what if’s circle round. What if Nan falls? Or lets someone in? Or starts a fire?

And this in turn has led me to feel guilty about neglecting friends. And led to reluctance in me getting a job. Thankfully my friends have been understanding and I have a job where I can work hours around Nan. I’ve come to realise if she’s going to fall, she will fall whether I am there or not. Hard as it is not to immediately shoulder the blame when something goes wrong, I cannot prevent everything. And going out will do me good, and make me a better caregiver at the end of the day.

I also feel guilty when leaving Nan with professional caregivers as I just don’t think they can do it as well as me, they don’t know her, not really. I feel so guilty if she is on her own as she must feel so bored and lonely.

I feel guilty when I get irritated at dementia Nan’s behaviours and repetitions, I know that it’s part of the illness and I think that knowing that means I should be able to rise above it.

I dread the day I won’t be able to cope any more because despite what everyone says I will still feel as though I am letting Nan down.

I feel guilty about the things I might be missing, or have given up/will give up for Nan. I shouldn’t regret losing these things due to all the things I’ve gained with Nan, and it was my decision to live this path.

But it’s important to remember, and have people remind you, that just getting through a week of caring for a loved one is amazing let alone the months/years that some of us undertake. Suprisingly not everyone would. We are doing all we can, and even when it gets too much and we have to consider outside help, it is not a failure or anything to feel guilty about. We tried, it was trying, no one will judge you for taking that step away from the path.

 Guilt according to Constantly Trying

As a carer, guilt is the millstone around my neck. I carry it around with me everywhere, occasionally resentment balancing on it.

I feel guilty for absolutely everything. Guilt for noticing he’s declining. Guilt for worrying about him. Guilt for feeling like I’m not doing enough. Guilt for using “mummy” skills on him when they should be for our three girls. Guilt for feeling lonely and isolated. Guilt for saying “no” all the time. Guilt for having no money. Guilt for wondering what the future will bring. Guilt for not working. Guilt for resenting him for getting ill. Guilt for resenting this illness called Dementia, and guilt for allowing myself to wallow in self pity from time to time and guilt for Dementia robbing our children of their childhood.

As a carer I do all that I can. I stretch myself to cover any aspect and I know it will get worse and then guilt rears it’s ugly head in case I won’t be enough. In the future I know that I will have to accept help (or even ask for it) and I know I’ll be insufficient and there’s more guilt.

It’s a lonely place being a carer, and so many emotions rattle around in my head, but the one that takes the wind out of my sails is definitely guilt.

A day in the life

This is an unedited version of the post I was asked to write for LivHome, so it may seem familiar!

My day usually starts at 8 am. Nan gets up, washed and dressed unaided but needs prompting to take her medication. A handful of pills later it’s time for tea and toast. Ideally I would like for this time to be silent, so I can gather my thoughts for the day, but unfortunately it is the time of day when nan seems most wired, so we chat about plans for the day, the weather and the pets (we have a rabbit and a cat, both of whom cheer nan up and help give her some responsibility). Once we have had our breakfast nan goes to watch television while I get washed and dressed.

Then it’s straight into chores for the day, be it washing nans hair, hoovering, laundry, changing bed linen, dusting, ironing. Although nan may not remember to these activities herself, she likes to be invited to help. So she has her own sweeper which she will use to hoover downstairs while I do upstairs. She enjoys feeling independent, so I try to put my own laundry on in two halves and ask if there is anything she would like washing, such as her dressing gown, or a dress. Sometimes she will want something put on, sometimes I have to sneak items into the laundry. We have our own dusters and work from each side of the mantel/dresser to meet in the middle. Thankfully nan seems to enjoy ironing, so I will be chief folder and putter away (allowing me to keep an eye on her in case she endangers herself). While undertaking chores we will discuss the weather, the pets, plans for the rest of the day.

Now the chores are done we have another cup of tea (Nan loves tea so dehydration is not something we have to worry about). We catch up with the news and nan’s lunch gets delivered. She can be quite particular about the meals, but as long as I dish them up and pretend to have added ingredients she will eat them quite happily. Pudding does come delivered with dinner, but nan always feels the need to have another so we have bought some low sugar jelly pots to ensure she is not harming her health. Over lunch we discuss the weather, the pets and the plans for the afternoon.

Afternoons are usually our bonding time. We go through old photos, old family videos, collections and I try to encourage nan to remember something significant. Sometimes this is successful and I discover something amazing about nan, such as her career as a dancer, others it will drag nan into a silence as she feels unable to communicate what is in her head. Once nan falls silent I have found it is best to let her gather her thoughts, rather than try and prompt her out of it. Nan enjoys Deal or No Deal, so this goes on everyday and is usually my cue to go upstairs for a while for some me-time. I had found I was sitting refreshing social networks during this time, but I have recently started using it more productively; for example updating my blog, exercising or reading the books I’ve had on my shelf for years.

Six o Clock, news time. Discuss the tragedies in the world, the weather, the pets and the plans for the evening. Halfway through the news is time for me to prepare dinner. I try and cook healthy-ish meals for nan, so will include hidden vegetables and not use too much salt or oil.

Eating dinner, nan loves everything I cook (except sausage skins and pasta) so will more often than not eat it all. Throughout dinner we will talk about the pets, the weather and whether or not I have plans to go out that night. (This is unlikely as I have been out, maybe 5 times in the 10 months I have lived with nan).

Then the soaps come on. This is my least favorite time of day. I detest the soaps. Nan enjoys them, or at least she would if she could remember who any of the characters are, or the storylines. This is my job, I have to remember every character, their family, their relationships and everything that has ever happened in all the soaps. Then at every scene change I answer nan’s questions, while still trying to keep up with what is going on, on screen, ready for the next round of questions.

At 9oclock I sort out nan’s medication, retreat upstairs to wind down for an hour. Then at 10 come back down, watch the news headlines, discuss the tragedies of the world, the weather and our plans for tomorrow. Once the news is over it is time to encourage nan to go to bed, lock up, take all the plugs out, put the heating on timer and discuss the day with nan while she gets herself ready for bed. We then have a goodnight cuddle and once I can see nan is in bed I go back upstairs, make a list of things that need doing tomorrow e.g. pick up meds from pharmacy, book appointments, food shopping list, chores.

Now I try to relax, destress and sleep, sometimes 6 hours, sometimes 3. However crappy I feel I’m up the next day using as many stress relief techniques as possible to get me through the day without bashing my head against a wall. Every now and again though I will get a special moment with nan that I know I will treasure, and that makes all of the repetition, the stress and the lack of youth/freedom worth it.

Thankyou for reading.