The dementia home that can’t cope with someone’s dementia symptoms…

Mum is exhausted. I am exhausted, and I’ve only been back to work for 2.5 weeks.  Caring for someone with dementia is deeply draining and thankless. Combine the grey weather, the fact I’m contracting away from home 2-3 nights a week and that my project isn’t going so great, I’m feeling a bit overwhelmed. 

Last Friday my dad had an assessment at a local dementia care home.  My mum and I had gone to visit the week before.  It was pretty run down and sad, a lot of people were at the latter stages of their dementia staring at the wall, catatonic; others were locked away reliving some past experience, the place was shabby, although the carers and staff were all lovely. 

No one there seemed like my dad who is able to interact, eat, dress and go to the bathroom himself, who understands that he’s an old man.  My dad, who can’t remember what he ate, or if he ate, or what day or year it is. My dad, who gets confused and very angry; who has bad mood swings, gregarious and engaging one minute and vitriolic and hateful the next. My dad, who tips from flirting and joking into deeply inappropriate sexual language without understanding that what he’s said is totally wrong.  My dad, whose body clock is out of whack and who is up every night til 3am then sleeps all morning getting up for breakfast at 2pm.  My dad, who still knows all the answers to the quiz shows, who loves to read his New Scientist magazine and recite his poetry. 

We took dad for an assessment because mum needs a break, we all need a break.  Mum is going to go home to the country of her birth for 7 weeks in February.  She’s aged so much in the last year since she moved in.  As dad’s dementia’s got worse, she’s visibly shrunk. We are going too for a fortnight. I’ve been in touch with social services since last year to start to arrange respite care for the brief time when we are all away. 

I guess you can probably tell from the intro to this post that the assessment day did not go well. When I picked dad up and asked how he felt, he said he was ‘middling to suicidal’, and he asked why I left him in that hell hole all day.  I felt awful.

By the time I got home he’d forgotten the detail of the day and said he’d be up for going as it was for less than a fortnight, and it would allow mum a chance to really switch off knowing he was safe.  So far so good.  I rationalised that even though I didn’t think the place was right for him, that he would be cared for and safe. 

Yesterday I got a call to say that the placement had been declined by the care home.  Today the social worker rang back to tell me it was because of dad’s inappropriate sexual language which upset the residents and made the care staff feel uncomfortable.  I’m annoyed. 

I’m annoyed at my dad, even though I know it’s not his fault. Even though I know that lack of control, lack of inhibition, inappropriate behaviours and language are all part of the Frontotemporal dementia that he’s been diagnosed with.

I’m annoyed at the care home. It is a dementia specialist unit.  Shouldn’t they be able to support someone exhibiting symptoms of dementia?

Not quite sure what solution will find us, but I’m hoping that one does because mum and I both really need a break. 

It’s been a good year- carer’s rights day

This post is a little bit of a year in review but also on Carer’s Rights Day it recognises the important role that I play as carer to my 3 kids, 2 cats, parents,  and of course, the subject of this blog, my hub. Those of you following this blog will know the term ‘carer’ is one I have a bit of a love-hate relationship with. I see caring as a mutual endeavour that everyone in my family participates in, as equals, not something I alone am engaged in. Anyway on to the year in review.

It’s just over a year since I left the job I loved to work independently and about the same length of time since my parents came to live with us. 

My dad’s dementia has significantly worsened this year.  He’s a bit like a smelly Gandalf, crossed with a healthy dose of Saruman. He has a long unkempt beard, he has lost loads of weight and has taken to wearing a long blue kaftan-like robe, or else a dinosaur onesie.  When he’s good there are glimpses of his old self and that’s great, and we haven’t yet had a time when he hasn’t known who I am but on a bad day he is so angry and vitriolic that it can be quite scary.

I think he is incredibly lonely and confused a lot of the time, but being born when he was, and being the man that he is, he could never open up and say that’s what is going on. This means there is a lot of bravado, pretending that everything is fantastic and claiming really isn’t it very funny that he can’t remember what we spoke about five minutes ago, or if he’s eaten any lunch?

My dad’s life is so much smaller than it ever was.  He sleeps until after 1pm most days, gets up and is served some food by my mum, watches TV until the early hours of the morning and then goes to bed, where he sleeps diagonally and restlessly and usually kicks my 81-year-old mother out on to the sofa.  She’s given up complaining but the exhaustion takes its toll on her. Despite this, she is refusing to get two single beds even though I think it would do them both the world of good.

Dad’s lack of personal hygiene is really getting to me, and despite well-meaning advice from both social services and the Alzheimer’s society we’ve not managed to identify any practical things we can do at all to address the problem. He hasn’t bathed since September. When I speak to my dad in his moments of lucidity, he says he just doesn’t care and being clean is not a priority… despite the fact that he really smells. He says he can’t smell himself so if it isn’t bothering him, why bother with bathing.

I do wonder if in addition to his memory loss that he isn’t also experiencing depression? I can only imagine if my world was confused, I felt overwhelmed and scared every time I moved away from the sofa and went out the front door that it could be a significant trigger.  

I constantly feel guilty about the lack of time I’ve been able to spend with both him and my mum.  For the last few months I’ve been contracting away from home at least a couple nights a week and often more, which means when I get home my time is thinly stretched. 

I don’t think there’s anything I can do to mitigate my guilty feelings, I think I just need to accept that I’ll never feel like I’m juggling all the balls comfortably and try and do the best I can.

This post has come out sounding a lot more ‘down’ than I’m actually feeling.  At the moment things are good. 

Hub’s medication, which apart from a couple blips over the summer where he ran out of prescription, is really having a good impact.  He’s generally much more in control and stable, and there’s none of the robotic, lack of affect which he experienced on previous anti-depressants and anti-anxiety meds.  We had a wonderful night away in a posh hotel for my birthday, and I’ve had special separate days out with each of the children recently too.  One of my biggest learning points this year has been that big family gatherings where my parents are together with my kids and a host of other people are generally not worth the stress. There’s too much pressure for the kids to behave perfectly, my dad hates being out of his comfort zone and my mum is constantly telling everyone (my hub and myself included) off.  So better to do the big family lunches with no pressure, not for ‘special and important’ occasions and instead to spend individual quality time with each person doing what makes them comfortable and happy, rather than trying to conform to some idealised notion of intergenerational family time.  I realise me spending time with each person individually then heaps the pressure on hub who needs to look after the remaining four, while two of us go off to do something fun, but so far it’s working, and I have to say leaving him home with 2 kids instead of three is much easier from his point of view.

Christmas this year is going to be pretty small, just the 7 of us, and hub’s best friend, but actually I’m looking forward to it, and I think based on what I’ve learned this year having a small low key approach is going to be a good thing for all of us despite my underlying party planning tendencies. I might not even get out of my pajamas!!  

Work has also gone from strength to strength.  From a year ago when I wasn’t sure if I’d be able to support myself, far less 7 people I’ve now counted up that I’ve worked on 17 projects across the country and learned a huge amount about the sort of work that energises me and where my real strengths are.  I’ve recently been appointed as a non-Exec director to a charity that totally aligns with my values, and I’ve been appointed as a fellow to fantastic university. My confidence is growing and I’m starting to think about starting up my own proper consultancy rather than just subcontracting to bigger consulting firms. 

All in all, I definitely haven’t got things cracked, but I feel like so much has moved on in the last year.  Work is great, family is solid, my hub (who used to be the sole focus of this blog) is starting to think too about what he might want to do outside of being the super hero parent and carer that he is, when our youngest goes to school next September.  We’ve had some tough challenges this year, not least hub’s mum passing away, but it feels like we are on the right path and I can’t wait to see what 2018 has in store.

Of course, as soon as I wrote that final paragraph I felt like I was tempting fate! But increasingly I’m learning the importance of positive visualisation and gratefulness, and that it is ok to be positive, grateful and hopeful about the future… and that it isn’t arrogance or smugness.

The fact is, that I am excited about what 2018 has in store for us. I know with dad’s condition and hub’s mental health, plus added to the mix our eldest starting secondary, our baby starting school and me wanting to push forward my business will bring big challenges ahead. But, I’m looking forward and think our solid base means we should be able to survive the shocks that inevitably come our way.

Merry Christmas and have a fab break.



Life lessons about anger

Why am I so angry, and why am I being so mean?

I feel like all the good stuff I learned in CBT has evaporated. I’m constantly on the edge of losing my temper.

Despite my last post being about my commitment to being present and to let go of the things I can’t control, I’m living in a state of low level frustration and annoyance… and the really annoying thing is that I’m angry about things I can’t control.

The pattern goes something like this. Blow up and be horrible to hub, kids, parents (not friends, I’m usually lovely to friends), then feel awful, then make amends, (when actually most of the time I’m not really sorry I’m just saying sorry to diffuse the tension as none of the stuff that’s irritating me has been resolved).

Then back to normal and repeat.

About once a month.

It is exhausting.

I wrote the first few paragraphs of this last Saturday but it feels like a lifetime ago. Today I’m feeling calm, happy and grateful.  So, what’s happened?

These were all the things that were bugging me and building up:

I felt I was carrying more mental load than hub (see fab cartoon about mental load here).  So, while hub was being amazing at tidying, getting the kids fed, getting them to and from school and to and from clubs and activities all with depression and anxiety and living with my parents I didn’t feel that what he was doing was enough.

I was comparing our family to other families where one person works and the other stays at home and I was feeling robbed.  I was feeling that although I was working, that I was also sorting many of the domestic logistics like paying for clubs, sorting school uniforms, submitting the gas and electricity meter readings, doing homework with the kids, reading with them and putting them to bed, cooking 2-3 nights a week, tidying up, all the gardening, running my parents around, taking kids away from hub when he was getting irritated by them, organising all our social calendars, buying birthday gifts for friends, kids’ parties, planning Christmas and Halloween, booking trips to see secondary schools blah, blah, blah. I had a massive tick list in my head of all the things I was doing.

It got to the point where, just as I anticipated, last Sunday we had a huge argument.

It wasn’t a shouty argument, but one where hub curls up in bed causing me to feel like the worst partner in the universe.  I almost apologised for being mean, just as I would usually do… Just to diffuse the tension.

Hub told me how awful I make him feel. Like I think he isn’t good enough for me, that what we have is never enough and that I always want more from him, from the kids, from life. But he also told me that over the last month or two he feels he has been doing the best he has in years.  That he isn’t overwhelmed by life, that he looks forward to facing the week and spending time with the family. He told me how much he loves me and loves our family.

The reality is that a lot of the rising tension over the last week or so has been money-related.  I’m earning good money now that I’ve started my own business, but I feel a huge amount of pressure to provide.  A contract I was expecting to start in September fell through, and all I could see was a gaping financial hole.  Hub didn’t seem worried at all, saying ‘It will all work out, you’re great’, and in the mean time I was getting more and more annoyed about picking up all the stuff we agreed would be ‘his job’, while he wasn’t showing any signs of helping me if ‘my job’ didn’t work out.

I shared all of this with him and he let me know he’d never let our family sink financially. That he would go back to work if we needed him to, but that right now he feels like a footballer with a serious injury.  He said he is on the bench recovering, and he would go in to play if that was the only option to stop the team from losing, but the better thing for him to do would be to focus on getting back to 100% fitness. He is right.

We talked about our differences. Both in how we understand and experience the world, not just relating to his mental ill health, but the fact that I am an extrovert and he is an introvert, that I’m energised and excited by totally different things than him.  And we’ve compromised.

I won’t invite people over anymore for the whole weekend (which I did last weekend), or drag him to loads of parties, or host loads of parties, but we will hang out as a couple with other couples, we’ll have a few dinner parties.  We will start small and stay small, but I can go out and get energised by other people and not feel guilty about it.

The argument and its resolution this month seems more important than previous ones for a number of reasons…

… because we both talked about the real root of our fears and worries and because we started to recognise the pattern

… because it was not a surface level conversation

… because we both agreed that the right thing to do would be to let him continue his recovery

…because he was right, I shouldn’t have worried about money and in the middle of last week I landed a big piece of work which will keep me busy til Christmas

…because life is complex and complicated and he constantly reminds me that we need to look at what we have rather than what we don’t

… because a marriage is not about ticking boxes to see who has done most

…because we both know we have to work hard to make our marriage work

… because we love each other, support each other, are committed to each other and our children.

I can’t say I won’t ‘blow up’ again next month, but hopefully returning to this post will help me to remember I’ve gone through this cycle before, and to remember at the core there is a lot more to be grateful about than there is to worry about.

Waving goodbye to summer

I can’t believe it has been nearly three months since I last blogged.  I’ve been feeling pretty rubbish the last week or two and it’s been nice to come back here and read my posts to remind myself of how far things have come. 

In summary, on the surface, we had a pretty, fantastic summer:

  • Seven weeks where I only worked seven days, loads of lovely free days out with the family and an amazing if totally exhausting trip through Europe with the hubs and kids.
  • Brother, cousins and friends stepping in to look after my parents while we were away in Europe.
  • No major depressive or anxiety episodes for hub.
  • No major injuries or falls (aside from firstborn breaking her arm in two places two days before school broke up; but, relatively minor when you consider the fall that led to my mother in law’s passing at Easter and my mum’s major fall back in April).

But I guess this version is reflective of the Facebook society in which we live where we paint everything in an overly positive light. The reality is that summer has been tough and I’m looking forward to getting back to work and routine.

Kids have been bickering, all over-tired from too many late nights and too many devices.  Hub has had enough of the hols too and the constant cleaning, cooking and entertaining our delightful progeny and I’m questioning the whole three generations living together thing.

It’s been over six months since my parents moved in to the annex and nearly ten months after they arrived in the UK. I am still not sure if the move was the right thing to do.  Hub and my mum barely talk to each other and relationships are tense.  Mum isn’t the grandmother I thought she would be, doing crafts and teaching the kids to cook as she did with me. She has established herself as another disciplinarian constantly telling me, telling hub and the kids to shine their shoes, do their hair, cut their nails, iron and help her out with a never-ending list of chores from dead heading the roses to sorting out finances.  I guess she’s earned it and she’s ‘old school’, but it is hard getting the kids to be effusively loving when faced with a constant task master.

It’s funny because when mum talks about us to others we are the best thing in the universe, the kids are angels and I’m a star, but I wish she could show some of that positivity to us rather than everyone else.

I know it is a huge adjustment for them and writing this I am feeling awful for being such a bitch.  They’ve moved across the whole world, uprooted themselves and probably imagined a very different future too.

Dad’s dementia has got worse over the last 6 months and particularly over the summer.  He is happy in the annex, but if we try to take him out he gets angry and quite aggressive.  His bathing and shaving has gone to pot, which I never knew was a common thing with memory loss.  He last had a shower about a month ago, and it really isn’t pleasant. He’s grown a beard which he hasn’t had for about 35 years. It could be that he’s forgotten how to bathe, but also apparently showers can seem quite scary and loud when you are confused and there are often also issues with depth perception which mean people with memory loss can’t quite see things properly in a white bathroom.  I feel for mum, and it’s sad for me too to see that dad I knew disappear. 

We’ve got our lovely dementia navigator from the Alzheimer’s society coming over on Monday so I am hoping she can help with some practical advice on getting him clean! 

Even though hub he says he is ok with me spending time with my parents in the annex I feel guilty about leaving him with the kids as I know how stressful and overwhelming it can be for him. This means each time I rush in and out of the annex as quickly as possible to get back to our house. As a result, I don’t spend as much time with my parents as I’d like and I feel guilty about that too. I also feel guilty that I’ve taken mum away from all her friends and a vibrant community to live an isolated life in the bottom of the garden.  I’m sure she doesn’t see it that way, but that’s how I’m feeling at the mo.

We kind of feel like neighbours who look in on each other, and I feel like paid help brought in to do the banking, shopping, and life logistics rather than the happy family I naively imagined.   Perhaps it’s that ‘fixer’ thing I’ve got going coming back to bite me.  Hub has complained several times over the holidays that I am totally incapable of chilling.  I can’t just sit.  When I sit, lists form in my mind of all the things I want to do. And my mum is the same. Then I rush around a mile a minute and get annoyed because no one else is helping me, or I get tired, or I turn into a martyr who feels they are the only one who ever does any work.  I know…. It’s all of my own making.

 And being the fixer that I am when I do steal 15 minutes to go over to my parents I spend time doing all the things mum’s written on her lists as I want to be as helpful and productive as possible.  But I leave feeling deflated.     

That said, I know what I need to do. It’s what I’ve been writing in these posts for nearly a year.  I need to chill out, I need to do nothing, I need to enjoy games and silliness and chats with no purpose.  I need to accept that mum isn’t going to change, just like I accept hub’s illness, then I need to focus on quality time, not ticking boxes.

Reading my ‘Facebook’ version of the summer holidays in the first paragraph I do have so, so much to be grateful for.  I need to stop putting all these expectations on myself and everyone else so that I can enjoy what I have and stop feeling frustrated about all that I haven’t yet done or got sorted. So, here’s waving goodbye to my summer feelings of inadequacy and hello to autumn of being present and stopping with the lists!!

p.s. Since writing this post on Friday I’ve had two cups of tea, had a little sit and taken mum to the shops.  I’ve still got a mega list of things to do not least because I have 45 people coming today to celebrate mum and dad’s 40th anniversary, but  baby steps… I’ll get there.


Summer lovin’

It’s been a long time since I posted, and when I look back over this blog I can see it has a pattern.  Less blogging in the summer and more in the winter. Less blogging when everything is going well, and more when I’m right on a precipice.

I don’t think it is as simple as ‘we are all happier in the summer’; but, there certainly does seem to be a seasonal element to both my husband’s depression and anxiety and my own mood.

So, what’s been going on since Easter?

Well in the main there isn’t much to report.  Barring some quite understandable bad days (given that his mum has passed away at Easter), things are pretty stable for hub.  He’s been seeing a talking therapist since around March through the NHS and it seems to be making a much bigger difference than the CBT he’s had previously.  The therapy finishes next week, so we’ve been talking about how we maintain the resilience he’s built up once he hasn’t got that weekly check-in point.

We’ve finally got a good relationship with a GP who seems to understand our whole family (not just hub’s mental health, but my aging mum and dad with dementia, as well as the toll that caring can take too). Let’s just hope she stays in the practice as there seems to be such a high turnover of staff across all the GP practices in our area and across London more widely.

We’ve only had one wobble with the GP since Easter and that was when hub’s prescription ran out. He was without meds for about 4 days (and didn’t tell me until he started getting the debilitating ‘brain zaps’ which are so common when withdrawing from SSRIs). He called in tears after the kids were late to school, he’d forgotten the littlest one’s lunch and the pain and exhaustion of the brain zaps were too much. He had called the GP several times, and the receptionist was refusing to sort the repeat prescription because he needed to come in for an appointment. But there were no appointments available for a fortnight.  Hub was not in a good way.    It was a ridiculous situation, but eventually after I called and explained just how bad the situation was,  we ended up with a repeat prescription and regular GP appointments.  This has happened before, (see my previous post on males presenting with mental health issues), and I just wish there was a better understanding that if someone is calling saying they need help with a mental health issue, even if they sound very together, it is something to be taken seriously. 

Anyway, that event made us both realise just how important both the combination of medical, psychological and physical support is to hubby’s continued health. And since then things have been pretty good.

My business (which I started when my parents moved in with us last November) is going well.  I know I need to do more to prioritise working at home and saying ‘no’ to work and ‘yes’ to home. I also know I need to focus on being more present in the moment and to stop rushing about ‘doing things’ all the time. My kids are constantly calling me out for working or doing housework and gardening when I’m supposed to be in family mode.

But when I’m the only one earning, and when I see house-stuff piling up I do find it difficult to prioritise sitting down and watching TV or playing a game.  As we hit the summer holidays I promise that I am absolutely going to rebalance my priorities.

(Just want you to know that I rewrote that last sentence about 6 times. It started off as far more wishy washy – ‘I know I need to try…’ ‘I am going to try’ before ending up with the much more resolute – I am going to nail this! So much research shows that being positive, intentional and stating your commitments out loud to other people makes it much more likely that you will achieve them, so I’m taking a lead from that research…. I am going to be more present at home, I am prioritising home over work and I am going to have a fantastic summer.  Hope you all do too.  xx


Death in the family

 I blogged a few weeks ago about my mother-in-law’s fall and hospitalisation. At that point I was worried about my hub having to travel overseas to help his sisters care for her, and all I could think about was how he would cope on his own far away from our family with people who loved him but didn’t know about his condition; and how I was going to cope with childcare, parent-care and work without his support.

But on Easter Saturday, we received the news that my mother-in-law had died in hospital, four weeks after she was admitted.  She was only 64. The week that followed was an absolute whirlwind.  On Good Friday, we had a house full – 30 guests and the first social occasion we have hosted since my parents moved in with us in November. On Easter Saturday afternoon, I had taken the kids to a BBQ with friends, but by Easter Sunday we had travelled through three different countries and made it back to our family on the other side of the world.

Hub, didn’t grow up with his parents, they divorced before he started school and he grew up with his paternal grandmother, while his sister stayed with his mum. His mum went on to have two more kids. Unsurprisingly, he has lots of ‘parent issues’ and has been angry with his mum and dad for a long time. But on the flip-side a lot of what he experienced as a child has made him determined to be the absolute best father and husband he can be. And he is amazing.

To be frank I was worried about how he would cope. His mental health over the last few weeks had been up and down and I was worried his mother’s death would be an understandable trigger into a major depressive episode. One of his sisters knows about his depression and anxiety but no one else in his family does.

But the reality was very different from my expectations. It was a healing, healthy, sad but joyous occasion.

My mother-in-law’s life was truly celebrated. Over 50 people visited her home every night between her death and the funeral and more than 500 attended the funeral. It allowed both hub and I to see her in a different light and to recognise that alongside the stories he had of her from his very early years, she had done so much with her life and was much loved. Spending that intense time with family was emotional, bonding and grounding.  It made me realise just how important not just the relationship I have with hub is, but the relationship we have with our extended family is. 

We decided to take all three kids with us, and with 10 first cousins all together for the first time in two years, and a new four-week-old niece in the mix we were constantly busy, not just with funeral preparations and legal stuff, but ten kids are nothing if not a good distraction from losing yourself in shock and grief.     

We all went to see Hub’s mum at the funeral home the day before the funeral. I was worried about how he would react.  His anxiety had been in over-drive since we arrived. But when he went over to see her from where we had been sitting in the very back furthest corner from the casket, he said the almost overwhelming anxiety he had been experiencing for five days disappeared, that it felt calm, he described is as feeling like a full-stop.  I’m proud of him, that even though he didn’t want to go to the viewing, even though he felt like he was going to be physically sick, that he was over wrought with panic and that everything was telling him not to go, he did it.

I organised the funeral service, the readings, the songs, the choir.  I asked hub to read, but he didn’t feel he could. He thought his anxiety would be too great. But at the crematorium after the service he spontaneously gave the best speech of anyone, and his was the only speech to be met with a round of applause. He spoke about whether he was qualified to speak given he hadn’t grown up with his mother.  But he reflected, with some passion, that his mother had been the root of all the strong women in his life: she was the maternal figure to six young brothers. My mother-in-law went on to have an eldest daughter and three younger siblings, and hub’s eldest sister went on to have an eldest daughter and four younger siblings.  All those women are strong and supportive, focused on doing what they think is best, and driven by a real belief in the importance of family.  And for hub, that was his mother’s legacy; that of a strong matriarch and a line of strong, supportive, focused and ambitious women. He said he sees all of that in our own eldest daughter with her own younger siblings. 

It made me so proud that he overcame his anxiety at the viewing, at the family gatherings every night and at the crematorium. I hope he will draw strength from the fact that he faced the things that he didn’t want to and nothing bad happened.  But most of all, so far, I am glad that this hasn’t triggered a major depressive episode, and that on the surface, for now it feels like he has some closure.   

‘Caring’ for someone you love

It’s been a tough couple of weeks to say the least.  I still feel like I am reeling. Hub’s mum passed away and we’ve been abroad at the funeral for a week, still feeling jetlagged.  I’ll write more about what’s happened, and what I’ve learned shortly. But in the meantime I’m reproducing the blog which was kindly published by the amazing mental health advocate and author Rachel Kelly last week.

Hope you enjoy…

Just like no one grows up expecting or planning to have a mental health condition, no one grows up planning to be the carer to someone with a mental health condition.

When I met my hub I was 17, he was 21 and we both worked as newspaper sub-editors. He designed the front page and the lead sports page, and all the other high profile stuff. I did the pages in the bowels of the paper that no one really reads in between attending university classes. I wasn’t a big fan of his to start with, in fact I was dating someone else in the newsroom, but after drinks, he ended up walking me home and we kissed outside my parent’s apartment. The rest is history. Twenty years, three kids and two grandparents living in a granny annex at the bottom of the garden later, we are still together.

I love my husband deeply and am constantly amazed by his tenacity and commitment to our family. There are days, weeks and sometimes months where his depression and anxiety mean he can barely get out of bed, that taking the bins out feels too much and the medication he is on makes him feel like a zombie. I know he’s had moments where he has felt that we would all be better off without him. On those days, I know his love for us and sense of duty is all that gets him through. I know during those times the last thing he wants to do is respond to a tantruming three-year-old who has the wrong colour bowl, deal with a father-in-law with dementia or break up a war between a feuding 8 and 10-year-old. I am so proud of him, that he remains driven and focused by our family and the kind of husband and dad he wants to be.

While I am seen, and classified, as a ‘carer’ to my husband, I don’t see myself that way. Ours is not a relationship of hierarchy or dependence, it is a mutual endeavour and I get just as much out as I put in. I’d encourage all ‘carers’ to think about why they do what they do, and what they get out of their particular set of arrangements. We aren’t knights in shining armour saving damsels in distress! If my husband wasn’t at home I wouldn’t be able to have the career that I do, nor would we have been able to give my elderly parents a home at the bottom of the garden. I care for my husband, I don’t ‘care’ for him. Most of the time the label ‘carer’ is irrelevant and I don’t use it. In fact, it is only really in the last year or so that I’ve come to accept it at all.

But this isn’t just a love-fest where I tell you how fantastic my husband is, and how we have a great and rock-solid relationship. The reality is, having a partner with a long-term mental health condition is shit and I wish he didn’t have depression and anxiety. There’s so much I still don’t get, and I often say the wrong thing and do the wrong thing, exacerbating issues and making things worse.

My husband won’t tell people about his condition, which means as his partner I am often isolated, feel alone and have to make up excuses when he doesn’t arrive at a family gathering or event with friends. Sometimes I get cross when I have to come home at the end of a long day at work and have to cook, clean, help with homework and put the kids to bed, because I get tired too!

My hub’s depression and anxiety feel like a big cloud, a dark secret and something he is ashamed of. I know it is a medical condition, and there should be no shame involved, but that’s just me and I know he is in a totally different place.

The biggest advice I have for other carers out there is that it is a tough journey and you need to move forward on the basis of unconditional love. We have grown closer through the years, but I know for others that it can really tear a relationship apart. Know that you are not alone and seek support in whatever way you can. For me, twitter and my blog have been a real lifeline enabling me to connect with other people in similar situations, and get things off my chest. Over the years, I’ve moved on from trying to fix my husband and make it better to an acceptance of his condition. Through trial and error, we’ve come to identify the practical things we both need to do when he has a major episode. Simple things like making time to be alone together, checking in on him whilst I’m at work, giving him quiet space alone by taking the kids out and taking deep breaths when I am about to explode all help. Another thing that helps is reflecting that the condition is cyclical, it has highs and lows; and when he is in a deep depression it helps me to remember that every time before he has come out the other side and he will again.

We don’t have all the answers, and life is anything but easy, but we are committed to each other and we are getting there.

Counting my blessings

My brother and his lovely girlfriend said they wanted to do something to help with caring for mum and dad and after having tried weekly visits, which don’t seem to really work for any of us, we’ve settled on them coming every six weeks or so to have a sleepover and look after mum and dad, and the three kids. This means that hub and I get some quality time, and hub in particular gets a break.  My brother and his girlfriend don’t know about hub’s condition, but they get what hard work my parents can be.

In many ways, my brother is very similar to me, enthusiastic, loving, positive, silly, fun-loving, and he amplifies all those qualities in me – I love being around him. But, in other ways, I am far more serious and rule-abiding than him, following a fairly traditional route to university, marrying my first serious boyfriend, proper jobs, kids, mortgage; whereas his life has been anything but traditional.  He errs on the scatty, hippy side and so I was surprised and really grateful when he offered this ongoing help. 

This weekend we went away for the second time this year. This time using the money I received for my carer’s respite break. Yes, I know the money was supposed to be for me; but, I would have felt weird using the money only on me, and it felt like a real treat to get a night away at a posh spa with hub.  We laughed loads, talked constantly and drank a bottle of prosecco whilst reclining in an outdoor spa pool…. Proper indulgent stuff that I usually sneer at.

The indulgence doesn’t align well with my values; but, I was grateful every second I was there and I need to remember my own advice… Which is, that I must invest in my marriage, take opportunities to laugh and recharge my batteries whenever I can.  I definitely won’t be going to a place like that any time soon again and it was lovely to have such a wonderful time.

Our garden has also just been finished.  It is now no longer a boggy, wet, clay mess; but a beautiful lawn with a lovely path and patio.  And with that, all the money I received when I was made redundant is gone! I’m proud of the fact that we managed to make the money last and we used it to build a home for my parents to live in, hopefully for the rest of their days. That money could have so easily evaporated with nothing to show for it, so I’m happy to see their little house at the bottom of the garden every morning when I wake up.

So here comes the dramatic part of this week’s instalment…

Like I posted the last few times, it really does feel like every time things calm down something else comes from leftfield to test us.

Whilst we were away, mum and dad came up to our house for dinner with my brother, his girlfriend and the kids.  Eventually they all curled up watching TV, and my mum (who is usually in bed asleep by 8.30pm) was fast asleep on the sofa.  Dad woke her up at 10pm to say the kids had gone to bed and they ought to be getting back to the annex.  But dad, with his dementia surprise, surprise, couldn’t find his slippers, mum got annoyed at having to wait for him and stormed off to the garden as she didn’t want to wait.

She went outside, looked up and was mesmerised by the moon… I kid you not.  Up until today, three days later, she still accepts no personal responsibility for what happened, it was the fault of the crescent moon for shining so brightly, nothing to do with not looking where she was going.  Anyway, she came out the door, looked up in the sky, missed the step down to the beautiful new Indian Sandstone path and fell flat on her back, cracking her head on the concrete, getting a 2 inch gash in the back of her head and a concussion. She has been traversing shaky, mismatched, uneven, wooden pallets and bog since February, but the first night she walked on the expensive, and supposedly safe new path this happens.  Thankfully she is fine apart from the gash, and I am grateful especially when you hear about other 80-year-olds taking a fall where the outcome can sometimes be catastrophic. 

This is the part that I am particularly counting my blessings about this week.  Not just that mum is ok, but about how my brother reacted.  If you had explained the situation which was about to happen and asked me to predict my brother’s response beforehand I would have said he would have called us at the spa and asked us to come home. He didn’t do that.

He called the ambulance, spent the night in A&E with my mum; his girlfriend looked after the kids, and dad who arrived in our house very confused at 4am when he rolled over to see that mum wasn’t in the annex.  No one called us, or even texted us.  We got up in the morning, slightly bleary eyed after too many drinks, and decided to go back for a swim. We didn’t get home til lunchtime. 

And this is what I am counting my blessings for this week.  Not that I’m having to cook extra meals for mum and dad, and check in on them every couple hours, and not just that mum was relatively unharmed, but I am counting my blessings that by me stepping away it gave my brother the opportunity to step up and to show me that all along he had that ability to do things I didn’t give him credit for. 

If we’d both been there I would have flown into ‘fix it mode’, and tried to control the situation. My brother did amazingly, so did his girlfriend.  Everyone was fine, and we still managed the break which meant we were so much better prepared, rested and able to cope when we got back. Another life lesson learned this week.  Sometimes I need to step back so that others can step up and I’m not the only one who can fix things. Thanks little bro.     

Top ten tips for being a resilient carer

The sun has been shining for the last four days, which for England, in late March, is fairly unheard of. Maybe that’s what has me in a particularly resilient and positive frame of mind.  A few things have happened over the last couple weeks that could have set me off course, but they’ve been coupled with good things too and generally I am feeling strong.

I wrote last time about my mother-in-law’s major injury and that my hub was likely to have to travel overseas to be with her. At that point I was feeling overwhelmed, like I just couldn’t catch my breath.  This weekend, on Mother’s Day morning at about 9am my parents arrived at our house, having traversed the muddy garden from the new granny annex to say that in the middle of the night, for no apparent reason, the brand-new plumbing system in the annex had backed-up and the bathroom had flooded.  They’d both been up all night, were exhausted and dad was particularly confused and agitated.  My immediate thought was that this was the last thing I wanted on Mother’s Day, that we currently have zero savings and there is no way I’d be able to afford to fix anything.

Hub and I went over and hub quickly worked out that someone, probably dad with his dementia, had turned off the electricity supply to the plumbing system.  We fixed it easily, a flick of a switch (coupled with post-it notes in bright colours all around the switch for future reference warning ‘Do not ever touch this button!’), I spent a couple hours cleaning up and we carried on and had a lovely day.  But the events of the last couple weeks have got me thinking about how I react to things.  Sometimes I can take things in my stride, and other times as a carer for my hub, my three kids and my parents I feel at breaking point unable to cope and pretty overwhelmed.

I want to understand, in a very practical way, how I can increase my stores of personal resilience, and how I can keep them strong.  There were some positive things that happened since I’ve last written which have really helped me to take a glass-half full approach and I am using this post to work out how to maximise these sorts of things happening in the future. I know I need to identify the things that make me feel strong and resilient as a carer and a person. I need to foster those things and create the conditions which help them to grow.

This post is about distilling those things so I can come back to them later, when inevitably I start to wobble. Caveat alert! This is unashamedly a list of things that help me feel strong, it isn’t a drag and drop list for everyone, but hopefully some of the things on here might resonate with others too.

So, without further ado, here are ten things that have helped me feel resilient in my caring roles in the face of set-backs …

  1. The weather: Well definitely, the weather helps, but there is not a lot I can do to control that. I suppose I just need to remain cognisant of the fact that my mood, and my resilience, almost 20 years after migrating to this country, are still affected by sunshine!
  2. Realising care is a mutual endeavour: While it’s important for me to recognise that I am a ‘carer’, equally I need to lose the label most of the time. I care for my husband, I don’t ‘care’ for my husband.  They are two different things.  This isn’t a relationship of dependence or hierarchy.  We are an equal partnership and he does as much which keeps me strong and helps me achieve all that I want to at work and at home as I do for him.  I don’t know many husbands that would say yes to staying at home to look after the kids, whilst living with parents-in-law (who they don’t really get on with).  I get a lot out of my parents being here; and my kids do too.  I need to recognise, value and not take for granted all the things I get out of my particular set of arrangements – caring is a mutual endeavour.
  3. Taking a break: I received a call from my GP last week saying they had recommended me for a carer’s respite break. Taking a break from caring helps whether it’s a night away or a cuppa (or more likely a glass of wine) with friends or a daytime nap. It gives me a chance to breath and means that I can cope better when things are tough. I remember back in the early days of parenting I could cope so much better with a crying baby when I had managed just three hours of unbroken sleep.  I suppose this tip is about recognising it is important for me to recharge my batteries.
  4. Positive feedback: But the carer’s respite break is doing more than just giving me the opportunity to take a breath. It’s also been important because someone ‘professional’ recognises I am doing a good job and told me. Saying that I need positive feedback, kind of makes me feel a bit weak.  I think I shouldn’t need others telling me I am doing well, I should be able to give myself all the affirmations I need to keep going. But I guess it is the equivalent of me telling people I work with, or the kids or hub that they’re doing well and I’m proud of them. I need to be cool with the fact that positive feedback matters and I need to seek it out because it makes me stronger.  Cynically I know why the GP surgery did it. If I can care for my family it’s a hell of a lot cheaper than the state having to bear the costs of caring for a 75-year-old with dementia, diabetes and heart problems, an 80-year-old with glaucoma and diabetes, and a 41-year-old with chronic anxiety and depression. So, shelling out a couple hundred quid for me to have a break is a good investment for them. But nonetheless when they called me up ,and someone, a real person, said on the phone I was doing a good job, I smiled all afternoon.
  5. Goals that stretch me: The weekend before last, I ran my first half marathon. I started training in November when I could only run about 2 miles and at that time a half marathon felt like a totally unrealistic goal. And 4.5 months later cheered on by my family I managed to run just over 13 miles in two hours and 12 minutes.  Hub cried as I crossed the finish line (he will deny he did this, but I have witnesses!), he was super proud; the kids were proud, mum was proud, and so was I.  The thing about achieving what seems like an unrealistic or overambitious goal is that it gives me the strength to do similarly ambitious things in the future.  Being told it is impossible or really difficult to do something and then committing to doing it in itself is a real driver for me.  I totally appreciate this flies in the face of quite a lot of advice about setting realistic goals, taking one day at a time and baby steps, but for me something big and ambitious really helps.  It was the same with setting up my business, and building the granny annex.  I was told it would be tough, which made me even more determined to make it happen.  I haven’t got any big goals at the moment, and I know pretty soon I’m going to feel compelled to develop some.
  6. Being silly: I wrote previously about the importance of being silly and laughing, particularly when life and caring responsibilities feel so serious. I need to remember to make time to do things, and be with people, that make me forget for a moment all the other stuff and make me laugh. My friends, my kids, my hub, music and dancing all help!
  7. Controlling my reactions: CBT: I’ve also written previously about my experience of online Cognitive Behaviour Therapy (CBT). It’s been useful for me to realise I need to practice at taking a step back from things, and not to immediately react. I need to make sure I think about whether a different reaction might be better and calm a situation down.  I have to say I’ve not been consciously practicing this as much as I’d like, but on some subconscious level I must be doing something as I think I’m getting better!  Take the annex flooding for example.  Before CBT, I would have been flustered and angry when my parents came to deliver the news; but, on Sunday I was calm, I didn’t get angry, I didn’t blame anyone, because, in reality, what is the point of blame and accusations?  And as a result of me being in control of my reaction we managed to clean up and move on quickly not turning it into a major incident.
  8. Being inspired: I know I can get myself out of a funk by seeking out inspirational people.   This isn’t about reading the biography of Nelson Mandela, but about connecting with real people who inspire me through twitter and events.  I’ve been surprised and encouraged that when I approach people they’ve generally been really responsive and positive; and that’s upped my personal resilience stocks and sense of self-belief.  The work of the Aspire Foundation, led by the totally inspirational Dr Sam Collins, and their amazing events and the work of the Edge, and the School for Change Agents, led by the equally fantastic Helen Bevan the Chief Innovation Officer for the NHS have both been particularly useful in connecting me with inspirational people who are fairly far removed from my work and social networks.
  9. Taking a reality check: Linked with the theme of inspiration, sometimes it really helps when I am feeling overwhelmed to take a bit of a reality check. My @hubbydepressed twitter feed and the connections I have made through twitter and blogging are great at giving me the reality check I sometimes need.  There are so many amazing people out there dealing day in day out with challenges much tougher than I’ll ever face.
  10. Sharing/reaching out: This blog and twitter have been incredibly cathartic for me. They’ve given me an opportunity to offload and get things off my chest. It’s helped me to be able to let it all out and move on.  This has been particularly important as very few people know about my hub’s mental health condition.  The blog and twitter account have also enabled me to connect with people in similar situations whether as a sandwich generation carer, or as someone whose partner has mental health issues.  They’ve helped me feel less alone and that’s helped my resilience.

So that’s it. My ten tips for resilient carers… hope they’ve been useful.  I know I’ll come back to them.

Relative Calm… yeah right!

I have a mentor buddy. We meet up every six months or so. It works really well for me (and I hope them too!). Instead of a traditional mentor/mentee relationship it is more about reciprocity and mutual support.  We set some goals, we talk about how stuff is going, we review where we got to on our last set of goals. We cover both work and family stuff. 

We met last week and at that point things felt great.  I felt like I was riding a wave.  Like I had been struggling to get up on a surf board for ages, but now that I had, I could see the whole beach and was riding in to shore. 

It was a good opportunity to reflect on just how much had happened in the last six months.  When I last met with my buddy in November I wasn’t even sure that we would get planning permission to build the granny annex. I thought we might have to sell up and move somewhere bigger and cheaper. I wasn’t sure our marriage would cope with the stress of three generations in one home; and I had just started out on my new business with only one client and a big gaping hole and a lot of uncertainty about how I was going to pay the bills.

Fast forward to last week. Now mum and dad are settling in to their annex and starting to be more independent. Preparation for my big run – my first half marathon-is going well back in November I hadn’t even started training. Hub is back on his medication and seeing a therapist and is incredibly supportive of the fact that work is super busy with around 7 different clients.

And all of that is still in place…

But we have had a hell of a start to the week this week and it’s only Wednesday.  Part of me wonders if I am living in some weird version of the Truman Show (for those of you who haven’t seen it, it’s a Jim Carrey movie where he thinks he is living a normal life, but actually he is the star of a reality TV show he’s been in since birth.  Anyway, feels like just as we manage to cope with everything and life calms down, it becomes ‘boring TV’ and the producers of the TV reality show that is our life start heading more crap our way. 

My mum, who has a far stronger faith than I do, always says that ‘God never sends you more than you can handle’, and no doubt that is true and we will be fine, but I do kinda wish I just had a little time to catch my breath. 

In fact, it is interesting that at my mentor buddy session I didn’t make any big commitments, which is totally unlike me.  My plan for the next six months was to 1. Run the half marathon without stopping 2. Be ok with no major goals, just enjoy the relative calm, settle and try and consolidate 3. Explore a new business idea I have but don’t put any pressure on and 4. Put more time in at home with hub and get a better work-life balance. 

And I will do all those things.

But on Monday lots of things happened.  My sister in law (my hub’s sister) had a beautiful, healthy baby; my mum’s brother died (he had been sick for a while so we had been expecting it); and hub’s mum had a major fall, shattered her pelvis. She is now unlikely to walk again as they cannot give her the surgery she needs due to all the other health complications she has. She will be in hospital for 6-8 weeks.  Hub is shaken; and I’ve not really been able to support him at all this week as have been all over the country with work.  I think the right thing will be for him to go to be with his mother and help out his sisters overseas especially as one has her hands full with a three-day-old; but, equally I am thinking about how we then juggle work, and care in our home if he is gone.

In the end all we have is family and that has got to come first; and certainly before my client commitments.  Not sure what will happen next, but certainly doesn’t feel like the ‘relative calm’ six months I was imagining last week.