The difficult shift in parental responsibilities.

Please, I do not want any tea and sympathy from today’s blog. I’m simply using it to voice my frustrations. All I’ve ever wanted my blog to do is share my thoughts on the struggles with ageing Parents. We all have Parents who will get old. We have the responsibility to take care of them. Nobody is immune from this. My blog is a cathartic process for me. When I feel crap, writing about it seems to help. I also hope that someone else, on a similar journey, will identify with the complexities of all the mixed emotions you feel.

Our cousin, Bonnie, is a total inspiration to me. She is certainly one person who could allow herself those ‘poor me’ moments, but she doesn’t. Whilst she’s waiting for results from a CT scan, post yet more Chemo, her attitude is as courageous as ever…

“So many things with cancer are out of my control… My hair is mine though, so I didn’t really care what everyone else thought I should do.”

Even Bonnie’s attitude to deciding, for herself, when the right time was to cut her thinning hair, was forthright. She is such a brave example of not letting things beat you. I have nothing but complete love and admiration for this woman. When life throws you a curveball, you just have to keep dusting yourself off and renew your fight. Just like our incredible Bonnie xxxxx

So this isn’t a poor me blog, it’s a frustrated scream, in a hope to kickstart my optimism.

One week on from Mum’s memory tests and I’m still awaiting the results and a date for the CT scan. The Occupational Therapist made noises about enabling services to allow me to get my own life back on track. Again, it’s all just talk right now. Clear diagnosis for Mum is all I bloody need!! I’m not a person who is very good at treading water, I need momentum. Lately, treading water is all I have been able to do, and it’s doing my bloody head in!

My Dad still continues to make progress. Whilst it has been incredible to see this during the last two weeks, I’m ashamed to admit I’m too exhausted to fully appreciate and celebrate this. The last four months have been mentally gruelling, leaving me with very little energy to focus on anything else. It’s amazing to see Dad become more aware, however, it does not solve the problem which lead to him becoming ill in the first place. He had become totally exhausted being Mum’s unofficial Carer, and I have no doubt that this played a huge part in his stroke.

During a conversation with a Practitioner this week, she made me aware of the fact that I might feel overwhelmed once help is in place. She discussed adrenaline being a resource that gets us through tough times, when we finally get chance to take the pressure off, we can often crash and burn. To be honest, I feel I’m already at this crash and burn stage. When you’re constantly told that things will be put in place and they just don’t deliver, you cannot help but feel completely despondent.

You reach an age where your children are becoming independent and self-sufficient. Suddenly the shift goes from being Parent to your children, to being Parent to your Parents. I have a family member who visits my Parents for a few hours every 5-6 weeks. They don’t appear to feel the responsibility to take care of my Parents as I do. I’m unsure how their conscience allows them to be like this, but that’s their issue, not mine.

My Hubby and I were meant to be having a night away in Dartmoor today, courtesy of our amazing kids. Unfortunately, Evie, our dog, has been really unwell this week. Sleep hasn’t been on the agenda and we don’t feel like we can leave her with the kids. Regardless of them insisting we go. It’s possibly a long term kidney problem. So Evie has to be our priority. It would have been lovely to get away, but sadly the timing isn’t right. Dartmoor will always wait for us.

Xxxxxx

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DVLA, Digestives and Doldrums.

I’m very grateful to my lovely Mum, she’s kindly put me on an accelerated ageing programme during these last few months. Each time I see a new grey hair, I know I’m winning! I am also in a deep and meaningful relationship with McVities… However, it’s a slightly one-sided partnership, it really does take the biscuit sometimes, but I’m not bitter.

This Saturday began like any other normal Saturday… With not just one, but three letters to Mum from her beloved DVLA!! We absolutely love their close relationship, it’s a truly, beautiful thing. Today’s offerings were; one to say they’d heard from her GP that she was having further tests regarding her health, another to say it will be “some time” before a final decision is made, the last one explaining that the decision was made and she would no longer be in possession of a driving licence… It begs the question as to how long the DVLA consider “some time”, as quite clearly, some time was a few minutes?? It’s fair to say we now have a plethora of correspondence from the lovely folk at the DVLA. Bless them. It’s amazing how the majority of their letters are received on Saturdays. To be honest, it’s all I look forward to each week. I’m totally at a loss if we don’t hear from them. Long story short … (Are you having a laugh, Soph?!), final decision has been made to keep Mum off the road, (after that thoughtful individual’s idea to contest).

Recently, I have felt completely defeated. The last fortnight I’ve felt beaten by the whole situation. There are only so many times that you can say, to the powers that be, that you are struggling, before you begin to just give up on yourself. When you’re fighting professional services for help, it takes all your energy, not to mention your spirit. I have felt so helpless with the fragility of my Parents’ situation. I know my Hubby has probably dreaded walking through the door, to deal with the aftermath of yet another day of frustration. (If I was him, I’d check the bin first to gauge how the land lies. ┬áThe empty biscuit packs would be indicative of my current mood… I’d make the right decision, and head for those hills!).

During the last week, there has been a definite shift in Dad’s mood, this is lovely to see. He has also been a lot more aware too. I can see a little bit of my old Dad in his eyes. He’s beginning to write again, and his determination to do so is completely inspiring. Once again, demonstrative that my Dad is small, but mighty. I can’t begin to say how fantastic it is to see Dad practising his writing. I’m still realistic, but I see small steps forward. It has been a long time coming… having monitored him for the past four months, and seeing very little improvement.

Yesterday was Mum’s assessment. I’d been dreading this day for weeks. Slightly bad timing being on my Hubby’s birthday. Hat had a Non-pupil day, so she was off as well. Bugsy and her took my Dad for a walk and coffee by the coast, leaving Mum and I for her assessment. The Mental Health Practitioner was a friendly chap, with a great sense of humour. For the win! He’d obviously been sufficiently briefed regarding the circumstances. When he asked me “Are you a grown up?”, I knew we were in safe hands haha!

He spent an hour and half doing intensive memory tests with Mum. It’s really interesting to watch. Testing all five domains of the brain; Attention, Language and Communication, Memory, Executive functioning, Sensory and Motor function. Mum certainly rose to the occasion, getting high scores. As I was sat there watching my Mum being tested, I felt desperate for answers to explain her change in personality. The high scores were definitely not giving any clarification! However, the last part of the test was the area she struggled with. It was actually heartbreaking to see her struggle to recognise objects, animals etc.

The Practitioner was really thorough. He said the next step would be to fast track Mum’s CT scan. He spoke about a need to gain the big picture to organise a care package tailor-made for my Parents’ situation. Finally I felt I was being heard. During Mum’s test, I had to fill in information as to how my Mum’s condition impacts on my family’s life. Now we wait for the results, wait for the scan and then hopefully have evidence for support. Yesterday wasn’t an easy day, but it gave me a much needed kick to keep fighting. Whilst I’m very much a person who despises labels, a diagnosis of some form of Dementia will get the ball rolling to get some help.

Our amazing kids have treated Bugsy and I to a night away next weekend, in our beloved Dartmoor. They’ll hold the fort here. So thoughtful of them… And very brave! As soon as I heard “Cream tea on arrival,” I was sold. Xxxxxx

Socks.

Yesterday I felt so overwhelmed with my Parents’ situation. I hate those days. I rely on my energy to get me through things in life, but my energy levels were utterly depleted. My Mum was testing my patience.

On Sunday, my Dad was really unwell. As we sat and watched the Remembrance parade on the television, he spent the whole time asleep. His body seemed extra exhausted that day. It’s so good to see him resting, but my Mum has a habit of trying to wake him up. I can’t begin to tell you how frustrating this is! She does not appreciate how unwell he is. On days where my patience is wearing thin, it’s incredibly hard to deal with her.

After spending so much time with Mum, I know her strategies to hide her dementia from people. As we left the surgery on Monday, a lady stopped to talk to my Parents. Dad had no energy to talk, but Mum was her chatty self, explaining to this lady that “Derek had had a minor stroke in July.” The word “minor” bloody infuriates me! Their GP has continuously pulled Mum up on this, explaining that Dad’s acute stroke has left him extremely unwell. As we said bye to this lady, my Mum then asked Dad who she was!!! This happens all the time. She fails to know people, but will continue to talk to them, hiding the fact that she can’t remember them. Mum has always be champion at keeping up appearances, so I shouldn’t be surprised by this.

Dad had another fall in the garden over the weekend. He was sporting a nasty cut on his hand. When I questioned him about it, again, my Mum leapt in. She hadn’t even been aware he was hurt. She then said it was “only a small graze.” … That it certainly wasn’t. My Dad has lost a lot of weight lately, weight he can’t really afford to lose. At times, he is really unsteady on his feet.

My Mum has taken to wearing Dad’s bright, stripy socks. She’s cross that Dad no longer wants to wear them. He has always been an exuberant, larger than life character… I know that he just doesn’t feel the flamboyant socks anymore.

Throughout all this, I have learnt so much. All the philosophy you’ve been brought up on, suddenly comes into practice when you’re parenting your Parents. As the dreaded revocation of Mum’s driving licence reared its ugly head once more, I found myself saying “Count your blessings please Mum!!”… Honestly, I could have said more! It really is cyclical. As a child, we are taught to be grateful for all we have, righty so. Sadly, when dementia steps in and takes control of our loved one’s brain, we often see behaviour that is so profoundly dissimilar to that of their former character. My Mum has never shown any selfish traits whatsoever, but she’s incredibly selfish these days. This leads me to unequivocally say that she has had Dementia for the last three years. With her assessment next week, I’m hoping we have a clear diagnosis. The Social Worker said it’s a given, however, I’ll reserve judgement until next week.

With the emotional roller coaster you find yourself on when looking after poorly Parents, I believe it’s justified to have moments of exasperation. I have all the patience in the world for my lovely Dad. My Mum, on the other hand, exhausts me! The character she presents is so far removed from my old, familiar Mum. I miss my Mum so much.

After a long chat with the Social Worker today, I feel I have a little more vision of where I’m heading, in terms of care for my Parents. It’s still waiting games; waiting for Mum’s diagnosis, waiting for care packages. I just feel that I know things are moving in the right direction… I hope at least! A couple of weeks ago I was discussing with our lovely friend, Pete, the fact that Hats and Bugsy worry that I’m losing my identity by being my Parents’ Carer. Pete reassured me that I will never lose my “Mad Soph” identity. I felt happier to hear that, until I told Hats and she said “I’m sorry, Mum, but it’s happening already, you’re losing your spirit.” I love my daughter’s honesty, even when home truths cut deep.

Blimey, this blog is a tedious read today. Apologies. I’m on it. Kicking my arse, eating the biscuits and looking for the funny side of life. I’ve even considered getting the Qualcast resprayed… Go faster stripes? My Mum’s “lovely, red friend” has to be the worst car I’ve ever driven. Anybody who wants to modify the Viva is very welcome right now. Happy Wednesday you lovely lot xxxxxxxx

 

 

Power cut.

Lights out, food stopped, power cut to the brain,

Pathways broken, processes damaged, lucky ones remain.

With no backup storage to cushion the blow,

Lights are back on, the blood regains flow.

 

The brain is amazing, until it falters,

But when it crashes, everything alters.

Taken for granted when it runs well,

A stroke gives no warning, the brain doesn’t tell.

 

The brain needs rewiring, a tangled mess,

You’re left with confusion, fatigue and distress.

You’re told to be patient, let the brain heal,

You’re allowed to feel anger, the stroke came to steal.

 

You’re my incredible Dad, you made people smile,

Now is your time to rest for a while.

We’re so lucky to have you, the stroke didn’t win,

My mighty Dad, hidden strength from within.

 

 

 

 

 

 

Sorry, an addition to my earlier blog.

I need to praise my daughter. She’s amazing how she reads me. Her hugs make me determined to kick my arse and keep going. I know she’s learning so much about life right now. She’s also probably learning how, sometimes, her Mum is a broken mess. I’m not proud of this. Hats, you are an absolute angel on Earth. xxxxxxx

The bloody DVLA and their letters!! The latest one for my Dad was about a field of vision test. My family and I are well aware of the fact that my Dad’s vision, four months on, is sadly showing no signs of improvement. The DVLA gave the 15th November date as the latest we could submit a field of vision test for Dad, before he faces revocation of his licence. Whilst we all know that Dad will probably never regain his ability to drive again, my Mum thinks otherwise.

Therefore, tonight my Dad was put through the ordeal of a test, to satisfy my Mum. My poor Dad couldn’t cope with the test. He had to abandon it halfway through. The Manager, Kerran, is so lovely, and knows exactly what is going on for my Parents right now. I know, sadly, my Dad will not be driving again. My family know this. However, it’s impossible to explain to my Mum that this is the case. She lives in a world where she believes my Dad will make a full recovery, and her trips to the coast will resume once more. I wish she was right and we were all wrong. I want my hilarious, sharp-witted Dad back so much. Being positive is one thing, but being realistic is protection against more heartache. I’ve always been a positive person, but I’ve learnt to be realistic.

So, tonight I’m faced with the realisation that both my parents have lost their independence. My Dad, post stroke, has always said that he never wants to drive again. My Mum, on the other hand, is a different story. I have cried lots tonight. My daughter and Al are amazing how they deal with my emotions. I’m not proud of letting my guard down, but sometimes life gets the better of you.

All I want my blog to do is, hopefully, give insight into dealing with Parents, who’s brains no longer work properly. Everyday presents new feelings and different hurdles. I have learnt that feelings and emotions need to be discussed. If you brush your emotions under the carpet, they’ll fester away. You can’t ignore emotions. They control who we are, as a person. It’s ok to have days where you struggle. Today is one of those days for me. I never imagined how hard it would be to see my Parents other than the familiar people they’ve been my entire life.

If my blogs today have bored you, my apologies. Sometimes, life kicks the stuffing out of you, momentarily. I think it’s ok to admit this. I’m not wallowing. I’m reflecting, and hopefully rebuilding.

 

Emotions.

My Mum’s response of “I don’t like changes” to my suggestion of looking at bungalows, or supported living, really resonated with me. Her life has changed significantly since my Dad’s stroke in July. As has mine. I’m certainly not the same person I was prior to Dad’s stroke. I see life very differently now. However, her lack of acceptance for a change regarding their living arrangements is so difficult to manage.

Yesterday morning, as my Parents had the Occupational Therapist there, I was able to give myself a couple of hours breathing time. I went and had cuddles with a gorgeous baby, Albie. This really did me good. Thank you, Jen, for letting me spend time with you and Albie in your gorgeous new home xxxx

My Parents-in-law came over at lunchtime, so I brought my Parents to my house to see them. As I got to my Parents’ to pick them up, the atmosphere was heavy. Mum said they’d had a difficult morning. The OT had apparently seen that things were tricky when she arrived, and she had spent the time talking through things with my Parents. I felt guilty that I’d had time away from the fragile situation, but I knew, for my own well-being, that I had needed that break. Dad found it really difficult being around all the family in the afternoon, whilst my Mum savoured every minute of it. Dad told me that Mum had been cross with his anxieties. I know when he says “cross,” he means that Mum has shouted. I hate this.

When I dropped my Parents home at 5pm, Dad was convinced it was 9pm and he wanted to go to bed. Mum shouted at him that he needed supper before bed etc. I don’t tolerate her shouting very well. She’s attacking a man, who, prior to his stroke, was the most intelligent member of our family. Sadly, now he is left so mentally damaged that he can’t fathom time etc. Explaining to Mum that Dad is completely powerless to this confusion and damage, is completely exhausting. I find the complexities of all the different emotions I feel, on a daily basis, so incredibly hard to manage at times. Dementia is screaming at Dad. Dementia is losing its patience with Dad. Dementia is belittling Dad. Dementia is stripping all my Dad’s self-confidence. It’s not my Mum. My Mum has always loved unconditionally. Cared unconditionally. She’s always been patient with people. I love my Mum. I despise dementia.

This morning, my Mum was having her hair cut and coloured. It was so lovely to have that two hours on my own with my Dad. We had a walk with Evie, then he came home and slept on my sofa. My Dad is very low right now, and very tired. The time apart helps them both cope, but this has a time limit. After an hour and a half, my Dad was telling me how much he missed Mum. He repeatedly asked me when she would be ready to pick up. This shows just how connected they are, yet so fragile.

I’m still reserving judgment on new strategies to make my Parents’ life easier to manage each day. It has been suggested that Dad could go to a day centre during the day. Again, I am yet to hear about this. My Mum said that the OT mentioned going to a stroke group. Mum told me that it might do Dad good to see others “worse off than him, those who have been left physically disabled.” I completely disagree with this. Obviously, the worse case scenario is death from a stroke. However, I really do feel that to be left mentally disabled, post stroke, is harder for a person. I actually have found myself wishing Dad had been left with a weak leg, or a weak arm etc. His broken brain is so scary for him. His world is now one of confusion and emotional turmoil. With no concept of time and other habitual routines, life is so difficult for him. Executive dysfunction is so cruel.

Life has changed so dramatically during these last four months. I just want to get to a place where both my Parents’ needs are being met. We’re certainly a long way off from this right now.

 

 

Warning! Strong language. Sorry.

I’m going to apologise, in advance, for any strong language. My blog, so I’ll exercise my right to vent and swear. For today anyway.

Not in a good place tonight, following a horrendous 24 hours. Yesterday afternoon, I arrived at my Parents’ to my Mum shouting at Dad. These moments are horrible. My Parents have always been non-confrontational sort of people. Seeing my Mum let rip on Dad absolutely crushes me. He’d lost an appointment letter he’d received in the post that day. Her reaction was irrational, over the top, but most of all, cruel. During these moments, I cannot help but defend my Dad. He looked so frazzled, beaten and totally lost. Again, I love my Mum, but fuckin detest this disease of the brain.

Dad’s words yesterday “Soph, I need a break from Mum and she deserves a break from me.” … Alarm bells once again. I phoned our Social Worker, but unfortunately she was on annual leave. So I phoned Dad’s Mental Health Practitioner. She arranged a meeting with Dad for this morning.

The Occupational Therapist phoned me last night and we had a long chat about separating my Parents during the day, to give them both respite. Last night I pretty much went to pieces. My Parents both need space from the other’s damaged brain. I hate dementia so much, it destroys all your familiars. It’s such a cruel illness.

People say that I must lean on the services for help. The thing that others fail to realise is that services are so overstretched, with huge funding shortages. You are not handed help and support on a plate. It just doesn’t work that way. Until you’re in similar circumstances, you don’t know how bloody hard it is to be heard. If it was as easy as asking for help and being granted it, I certainly would not feel so exhausted right now. Yes, I might be guilty of making the system work. Taking care of my Parents has meant that the services can pat me on the back and go about their day. However, when the heart rules the head, why on earth would I walk away from two people I love so much? It’s easy to judge, until you’re in a similar situation.

Without a clear diagnosis for my Mum, any sort of care package available is centred around my Dad, and my Dad alone.┬áToday, I cried for help and I finally feel I’m getting it. My Mum’s memory test has been brought forward to the end of this month. My Dad’s Mental Health Practitioner could see today that I am not ok. I really don’t feel ok. My Parents are both broken and it’s fuckin breaking me. This isn’t poor me, I don’t do the poor me routine. We’re all given a test for a reason. We all have Parents, there’s nothing to say they can’t be ill at the same time. A clear diagnosis for my Mum will provide clarity, but also the right sort of care for her.

The Mental Health Practitioner today echoed the exchange between the OT and I last night… Separating my Parents during the day. I’d like to say I feel more positive tonight, but I’d be lying. I want to see action before I pass comment. When Dad and I got home to Mum, after our meeting, I explained to her that care is going to be offered and that she will not refuse it. Her reaction was “We don’t need any help, Soph!.”… Sitting my Mum down and, once again, telling her that Dad has been her unofficial Carer for the past three years and now he’s very unwell himself, was not easy. This journey is so emotionally exhausting. Anyone who has a family member with dementia will tell you just how impactive it is on the family, as a whole.

I need to thank Gini, who has become like family to me. Also, my cousin, Marit, for being a rock right now. I have amazing friends in all of you. So lucky, and so grateful, for each and everyone of you XxxxxxxxxxxX