I’ve been holding onto pieces, swimming in the deep end.
Trying to find my way back to you ’cause I’m needing
A little bit of love…

We have all been there, haven’t we? Bound and broken, on the floor, inconsolable crying, screaming, needing something from someone, anyone. For me, more recently I have needed my Mum.
Desperately at times, for advice, reassurance, love, and mostly a hug. It amazes me how much you can miss someone who is so obviously, physically anyways, still here. But to what extent do I have my Mum anymore. Not in the way you might think. We as a family and me as her daughter, have lost my Mum in every conventional sense of the word except physically. I am now a caregiver for her, she doesn’t, to any distinguishing degree, have the capacity to look after me anymore.

I have written before about my Mum’s diagnosis and in a previous post, I did go into a lot of detail. I don’t feel like I need to again, as much. Mum had a horrible illness. Now not too often do ‘people’ refer to alcoholism as an illness but that is exactly what it is. A horrible illness that takes a grip of you and your life and turns it into something you never thought it would be. For I am sure I can say, not many people come out the other side of addiction with a happy story to tell. I’m sure if you asked my Mum now, if not forced by severely poor physical health and then thrown into it the mental health side of things; the dementia, she would either still be drinking now or regrettably, dead.

The photos above are memories of moments I will cherish forever. The top three are taking Mum to see Meatloaf at the 02 in London. The bottom picture if from the last time we went out as a family with my Dad, for his and my sister, Kayleigh’s, birthday to Port Lympne Zoo.

These are a far cry from what we were left with after decades of alcohol abuse got to her, not to mention the other stuff that happened along the way after my Dad had died.

These photos are so hard to look at, especially when I think about the prognosis at the time. We were quite bluntly told to prepare for the worst and get Mums affairs in order. She was hallucinating from severe dehydration and in kidney failure. How the hell she recovered from this; we will never know. But she is a fighter. She fought hard, for weeks for her physical health to improve and she did. But sadly, her brain; her memory, never fully recovered and still now we are battling for those moments of clarity.

Now don’t get me wrong, we have the most beautiful moments with my Mum, even when she isn’t completely there, or her retention is 10/20/30 minutes at a push. We can take her out now and she remembers the babies (mostly).

So why do I have this overwhelming anger and upset at the situation still. I must stress and I cannot stress enough; for the moment, the anger and upset aren’t aimed at my Mum. Sure, there are things she could have done differently, stopped drinking, chose to get proper help. But she wasn’t evil and should never be demonised. I think it is so easy for ‘us’ on the outside of this illness, the addiction, to exert what we would have done differently. How we would never have let it get that bad. How we would have chosen life. But when it comes down to it, none of us know what demons we are each battling. Our lives although similar in upbringing maybe, or similar in geography and chances in life, are our own. We should never judge someone’s mistakes, misfortunes or poor choices because we never know what we may one day be faced with.

So back to why I honestly feel so crap about the situation. The cards we have been dealt with, have been shit and I feel like every now and then we get thrown a proper wild card and my wild card at the moment.
Guilt…

I cannot help but wonder what it would be like to have a functional relationship with my Mum. I mean to an extent it is functioning but to what degree. I have a massive love and hate relationship when it comes to arranging, planning and then actually visiting Mum. For starters, she lives in a care home in Deal, so from me that is like over and hour drive, and it is to see her in a care home. There is very little privacy, and it smells like a care home and for loads of other reasons I hate going there. But mainly because the idea of a 60-year-old woman, that woman being my Mum, being in a care home at her age deeply saddens me.

Then let’s throw in the mix the fact that when I do see Mum, I get so frustrated and upset at the fact that I have to mourn the loss over and over again. I guess, we all to some extent have to face anyone in life with a gracious smile. Not knowing when we may see them or speak to them again. But I know from experience with my dad’s death and now with Mum being so frail and old before her time. That in fact her string is now a lot shorter than it should be. So really seeing her could be the last time we get to have a semi coherent conversation with her. And I think that it is easy to forget, just how frail she is. Physically she is better than those photos taken 5.5 years ago. But she isn’t cured, that damage to her body and mind are irreversible. To put it quite bluntly, she is a bit of a ticking timebomb.

Why do I feel so many mixed emotions. I hate, hate, hate the guilt. Because it is such varying guilt. One minute I feel bad that my Mum is in all this mess. I hate that she is in a care home, regardless of what led her there. She is stuck there now. Freedom has been taken from her. We have to ask permission to take her out, of course they let us. But we can’t just ring up our Mum and say “Hey fancy going for a coffee and a mooch around town?” This has to be planned by all of us. Planned around dinner times, med times, bedtimes etc. etc. Then I have the overwhelming guilt of not calling her enough, not visiting enough, not breaking her out of the care home prison she is in enough.

I don’t think anyone can truly understand how guilty you can feel when you know someone you love is trapped. In so many ways, my Mum knows what is going on. She has lost her memory, but not her mind. It is a difficult illness, dementia. Although Mum will with no doubt loose her mind, eventually. By this I mean her facilities and functions; maintain her personal care etc. At the moment, she has the ability to clean and look after herself, in that respect. So when she knows she will wake up and do the same thing every day with no escape. No freedom to pop to the shops, not being able to sit alone by the beautiful beach she lives next to how can I not feel guilty that she is trapped.

Then I flit back to everyone on the outside of this bubble rightfully saying, “but you have a family now that need looking after and a life to live” I know I can’t always visit my Mum, with work commitments and life commitments it isn’t easy to find the 6 ish hours needed to visit my Mum. Because it’s a 3-hour round trip. Then by the time we’ve got her out, in the car to the place were visiting it’s another hour. Then the meal or whatever were doing then taking her back. Time just runs away. Not to mention when I take the kids. The time they consume. But my goodness the guilt when I don’t take the kids is at another level. They’re missing out on valuable Nanny Maggie time and Mum is missing out on Grandchild time. Why should they all be punished because I might have a fussy baby, or a needy Caleb that day or Mum might get confused with Caleb not being a baby anymore. Again, the guilt continues.

I feel guilt that when we are out that I don’t have the ability to treat my Mum to everything that she wants and deserves. The other day for example when we went out to KFC for dinner, Mum asked for a milkshake. Bear in mind we had already spent £30 on chicken, and £40 at the PYO farm, the want for a milkshake tipped me over the edge. She had, had everything she asked for and wanted. But £2.99 for a milkshake I knew she wouldn’t drink, was too much. I couldn’t afford it all at best and I felt she wasn’t being grateful for what she did have, the mountain of fruit and meringues and everything else. The guilt after was horrific. I cried the best part of the journey home. Because I felt like I had snapped at my child. For simply wanting something, when they know no different. They (kids) don’t know the daily struggles to make all the ends meet on time and the food be on the table and it’s like the innocence of my Mum’s now life has taken a hold and she doesn’t know the cost of things anymore. I mean if were honest, the only care she used to have been how much a packet of 20 fags and a litre of vodka was. But life isn’t cheap. Yet the guilt I felt and still feel for not affording to give her the world eats me up inside.

This is going to be an obvious one, I think anyways, but the guilt I have once all this is over is that I couldn’t save her. Despite all my attempts, all my love and for all the will in the world, that wasn’t enough. My Mum was and is still, far from perfect but she is my Mum. I love her and she is everything to me. My love for music a mutual effort from her and my Dad constantly playing songs of meaning to us. My love for a party, being the confident outgoing one that always makes you have a good time. Usually because of alcohol but still a good time none the less. The way I overfeed everyone, you will not leave my house without being asked if you want a drink or are hungry. The love and compassion I have for those in need. My Mum in her prime was a nurse for stroke patients and then a carer. She cared like no other. Some would argue for others more than herself. The love and passion she had for my Dad. Behind closed doors they would argue of course. But the love she had for that man; for better for worse, has been an overwhelming influence in my life. Especially when it comes to relationships and friendships. I don’t and wont easily give up and I love like fire; intensely and until I can’t anymore.

I often find myself talking about my Mum in the past tense. For multiple reasons, but I guess because she in so many ways isn’t here anymore. Not in the conventional sense of a Mum. We all have different relationships with our parents. But I adore her, there will always be a reason to fight for her and love her eternally.

I guess after all of this, what I am trying to get across is that there will always be guilt, anger, sadness, or something that stops us from loving intensly. Our parents, our siblings, our partners and our friends. But at the end of the day we are all on this ride together. For better for worse so to speak. We all have guilt that can haunt us. We all have an anger about something that happened 20 plus years ago. We all have a sadness for the love that we have lost for one reason or another. But only we can change the feeling. We can’t take back the action or resent. But we can move and we should never let our own demons get in the way of this.

In my humble opinion, I truly know and whole heartedly believe life is far too fragile and short to be anything but in love with living.

“I was left to learn to live with my guilt and my terrible grief, the price of my shame.”
Albus Dumbledore,
Harry Potter and the Deathly Hallows

Music as always, is massive for me. I don’t just listen to the song, I genuinely feel the lyrics sometimes. I escape when I listen to a song and I know my Mum was/is the same.
So, if you have a minute go and listen to:

Bastille – Hope for the future “And ooh, I keep a picture of you here in my head”
Rod Stewart – Maggie May “Wake up Maggie, I think I’ve got something to say to you”
Eva Cassidy – Fields of Gold “I never made promises lightly and there have been some that I’ve broken, but I swear in the days still left we’ll walk in fields of gold”
Meatloaf – Heaven can wait “I got a taste of paradise, I’m never gonna let it slip away.”

Being Becka X