Bambi Legs

So mums bambi legs are causing us all trouble. Bless her spirit but she doesn't remember nor realise her frailty as in her mind she is a perfectly fit and healthy 30 odd year old.  Her thigh muscles have wasted so she finds it difficult to stand up herself but once standing she is pretty steady.  The issue is her trying to stand up when none of us are there to help her.

And so the falls began.  At night.  The only time she is left alone, other than taking the kids to and from school.

Mum has a hospital bed now, one of the many amazing things provided by the NHS, which has sides that can be lifted to prevent her falling out.  The only problem is if I put these up, she tries to climb over them which I reckon is a greatest risk than her 'just' falling out the bed. So I leave them down, which means mum is free to get out of her bed, alone, at night, with no help.

Which meant when she needed the loo, she would try to to get up and go herself - as any other fit and healthy person would.  Only she would fall over.  I would hear her cry out for help and find her on the floor, pick her up, help her back into bed and settle her down.  One night when I found her on the floor, she had broken her ribs in the fall and it would take weeks to recover.  This started another downturn in her health as it was sore to breathe in fully she ended up with a chest infection and her already small appetite for food decreased even more together with her appetite for life.  It was horrible to see her deteriorate - again.

Back in the swing

I've not written in a while for a variety of reasons, the main one is the last few months have been really tough and I have been getting my head round things.  So I've been in a bit of a bubble, getting things figured out, coping, readjusting, working, living and loving. And I'm back, of sorts, and looking forward to being in the swing again.

 

Mum had a run of chest infections since spring resulting in a number of hospital admissions culminating in me being taken into a wee room and being told she didn't have long left to live. I'd been waiting for someone to say that but somehow when it's actually said it's a bit unreal. Cue bubble.

Mum rallied to the degree she was discharged home with an 'advanced anticipatory care plan' and the expectation that we'll love her at home, make her comfortable but another infection would likely be her last. And so she came home. And I became a death obsessed wreck with a grim obsession with googling anything that would help me understand and reconcile myself with death. From 'How to tell when someone is dying', 'Life expectancy of people with dementia and copd' to 'what to do when someone dies'. I learned a lot.

It's strange looking back as not much had actually changed other than having been told what I was told in the wee room.  Mums needs hadn't changed much, she was more fragile than before, painfully thin with wobbly legs like a newborn deer from her weeks of being bed bound.  The change was in me as I felt I was entering uncharted territory and as a result was nervous.  So I cancelled the work I had lined up as I didn't want to let anyone down at the last minute and I also felt I needed to free my energy and not be distracted by work.  It was the summer holidays so the kids were off and I wanted to focus on loving mum and making sure we were all ok.

And so a slightly different journey began...

Mothers Day dread

It's Mothers Day soon & part of me is dreading it.  We're off to see the Muppets which will be fab but it's sad that mum doesn't realise she's my mum.  She thinks we're taking her just because we're being nice. It's awkward sometimes when folk ask if she's my mum and while I say yes, she looks at me like I'm a nutter! I call her Pat a lot now to side step the confusion.

Is having a mum who doesn't know who you are worse than not having your mum?

Both are crap.

I just read a post about a husband continuing to visit his wife who no longer knows him due to Alzheimers. He does because he still knows who she is.  I suppose my answer is in there too...to enjoy what I've got now but knowing that doesn't take away the feeling of a strange kind of mourning.

Freedom

I long to be free. But what is freedom anyway?

Just now, I crave for the freedom to take the kids to the park, to go out for the day - just us. No mission mum. No convincing her to come, no pushing her wheelchair instead of skipping with our girls. Being free to focus on them and not concern myself with making sure mum is ok. Being free to go out with friends and not have that niggle of how mum is at home.

Freedom is at my fingertips though, it might to be the free flowing freedom I imagine but does anyone have that? We all have responsibilities of sorts, so I have what you have and that is time organised freedom.  I have to plan what I'm going to do and when. 

And ask for help. 

And accept it.

Do I really want to be free? Free for the responsibility that love and commitment bring? 

I'll choose what I've got. And work on being better organised....anyone brave enough to want to help with that biggy? 😉

Selfless or Selfish?

I'm not this selfless woman that some people think I am.  I am looking after mum because for now it's the best thing for her but also for me. I'm putting my own needs before that of my partner and my kids and for that I'm selfish. And that's ok, for now.

I need to do this so that when she's not in my life anymore I can sit back and know that I've done the best I could and have memories to warm my cockles.  Dementia has given me my mum back.  Well, it hasn't given me my mum back but it has rekindled a relationship with a woman who is my mother and I want to make hay while the sun is still shining.

Our relationship was strained throughout my adulthood as Mum had schizophrenia and when she was having an episode it was horrible and she would say and do really awful things.  No girl should have her mum call her a whore.  No child should be chased and threatened with a dog lead.  No new mum should be woken in the early hours with ranting phone calls.  I feel a bit uncomfortable saying that as I don't want anyone to think badly of mum or pity for me so I say it only because it's real and too common and not talked about enough - mental ill health is a horrible thing and difficult to live with, especially when you're the kid.  But what was hardest was her point blank refusal to admit there was anything wrong, that maybe, just maybe, she had done something hurtful. I adored my mum growing up but I was also really confused by her.  Why did she say and do these things?  I sometimes wish I was more forgiving or more understanding back then but we each make choices that suit the circumstance at the time. And it was far from being bad.  But it was definitely strained.

So as time went on I chose to protect myself from her chaos.  Our relationship was an awkward dance until dementia came along.

Dementia took mums memories which meant she no longer remembered that she didn't approve of my life choices and she no longer focused on what I was (a daughter with all those unwritten expectations) but who I am (Colette) and who she is (Pat). Dementia stripped of all her 'shoulds' - how a mum should be, how a daughter should be, how children should be, and for now revealed her essence - free to do and be whatever and whoever she wants.  It also brought back her honesty - she's not hiding or kidding on anymore.  And while the ripple effect of this freedom isn't all positive with other 'should's' & social norms that I'd love to still there, for our relationship it's been surprisingly positive.

In the past couple of years we've had more open, honest conversations then we have ever had - because I'm no longer her daughter and she is no longer a mother we get to create a whole new relationship.  Don't get me wrong, if I could choose, I wouldn't choose this.  I would love to have a mum who cherished me and her grandchildren but I don't.  What I do have though, is a woman who loves me as her friend, who enjoys my company and thinks my kids are cute but a bit on the noisy side.

I am a selfish woman and happily so.  The time is approaching when I can no longer indulge myself as it's not just about me, I've a gorgeous family to nurture and create memories with too.  But for now, I'm glad I've had the chance to make some new ones with mum.
 

The pear #mumism

As usual, I brought mum through her variety of pills sprinkled over a chocolate mousse (puddings I've long since discovered are brilliant bribery). And a pear on a plate.  I thought I was being nice, and I left her & Kim to continue their blether and getting ready for bed. 

I peeked my head round the door to find mum looking a bit shell shocked and Kim heehawing laughing.  Mum had thought I'd given her a potato to eat and had been staring at the 'potato' asking why on earth I'd given her a tatty to eat.

It'd be funnier if you were there. Honest ;-)

Love is...

I've got the cold.  Which means one thing....a huge dose of self pity!  And a lot of hankies. Ok it means several things, including me snoring.  It's not pleasant and even woke myself up but it's John I feel for as I'm not the only one making noises through the night.

Mum makes noises too, bless her. It's usually an 'oo, oo, oo' sound that comforts her especially when her arthritis is sore.  But she goes on and on and on and on and it's hard to stay sympathetic when my head is about to burst, it's 3am and this 'oo-ing' is bounding through the house.  Usually I'll take a big deep breath and prepare my gentle voice and go into her room and gently remind her to take nice slow, deep breaths which usually stops her noise making.  Until she forgets and starts up again!

And sometimes I ignore it and roll back over to sleep. While John stays awake staring at the ceiling wishing for just one silent night.

That was us last night.  John was being serenaded by a pair of snoring and 'oo-ing' demented mums. And he still loves me. What a guy xx

Feeling alone

Caring can be a lonely old business.  That, I think, was the biggest shock for me.  I had visions of it bringing our family together - of my brothers and dad coming over to visit and our house becoming more of a hive of activity than it was already.  I love the buzz and the chaos that comes with a busy house and I looked forward to it.

To begin with people came to meet mum or those that knew her came to see how she was settling in.  And all was well with the world.

"I can do this!  This is going to work" thinks me.

Then...

It all stopped.

Much like the excitement that comes with a newborn baby - a new kind of normality returns soon after everyone has ooed and ahhed and had a wee cuddle.  That's when the phone stops ringing, the door stops chapping as often and you're left to it. Sink or swim.  And that's how it was, or rather, how it felt after the first few weeks.

We had Homecare carers coming in each day to help mum get washed & dressed in the morning and evening and the rest was down to me.  I'm totally not a home bird! I love getting out & about I love meeting new people.  I love working.  And I couldn't.  OK, I could have, but I was swimming in a self induced pickle sprinkled with a large dose of shell shock and a burning need to make sure mum was ok.

In hindsight I could have yelled louder, I could have asked for more help, I could have hounded social work but without knowing what questions to ask I felt in the dark.  My coaching background has held me in good stead with a lot of things throughout my life and with hindsight I think I had convinced myself I had an edge of invincibility so I was amazed how sanity, skill and common sense dribbled out my ear as my stress levels rose.  Resources are only seen by the resourcesful - and while I never lost the sense that the answers to my needs were at my finger tips, I just couldn't find them.

And I got lonely.

Caring can definitely be lonely work.  Unlike having toddler groups or softplay to go to if and when you want to, caring for someone who is in poor health revolves entirely around them.  It's all very well making plans but if mums not well or not up for going out, it ain't happening.  And that is sooo frustrating.  Wanting and needing a walk in the fresh air then not being free to do so without calling in a favour is soul destroying.

But as time went on I've adjusted.  We got more routine and more sleep and I found my bag of resources - which were, if you were wondering, where they always were and right at my finger tips.

I've learned to ask for help. I've learned to lower my expectations - in a good way, if you know me you know that I've always got a million things on the go! I've learned to roll with the good days and accept the bad days.  I've learned that I'm not alone in my loneliness.  I've learned that I don't have to be lonely.  I've learned that I quite like to be alone. Sometimes.

I've also learned that life is definitely hand knitted and while I might feel that the needles I've been given are a bit wonky, I've got used to them and have learned how to create something pretty and unique. Caring for mum has given me a new insight into life, I've got a connection with her now that I never had growing up and I'm making memories that, with good fortune, I'll never forget.

Care homes - what I wish I'd known

So as you know, mum lived in a care home for about 5 weeks before she came to live with us. And it didn't work out very well for her - or us.  This is what I wish I'd known.

Everyone I spoke to said to check out the Care Inspectorate reports - I did and the care home mum went into had a really good report.  In future I'll take these with a pinch of salt.  Reports are really only one persons perspective, fair enough some do ask residents and their family however I doubt any staff will give a no holds barr account of what could be done better to any inspectors.  It's a piece of information and something to use to start asking questions but don't base your decision on this.

Get really curious & ask LOADS of questions and turn into your own Sherlock Holmes.  But this is difficult when your not sure what questions to ask or what you are looking for which is why I'm writing this as if 1 person gets enough insight to make a good decision for their loved one then I've won a watch.

I felt we were rushed into our decision to put mum into a care home.  I was phoning and visiting lots with various success.  If you've had kids, it's similar to finding a good nursery - all the good ones have a waiting list so for me, a huge lesson is forward planning.  Start thinking about long term care before you need it.  Suss things out now, not when you're at crisis point.  Get on waiting lists - if a home contacts you with a place and you don't need it you just say no for now but keep your place in line.

So, what comes first?  For me the most important thing is what does your loved one want and need?  Take some time out and figure this out.

Look up putting together a one page plan as they are simple and summarise the really important stuff about your loved one in, funnily enough, one page.

Ask them and think yourself about...

• What environment they thrive in?  1:1, small groups, large groups, loud, quiet etc

• What do they enjoy doing?

• What type of people do they like?

• What type of people do they dislike?

• What conversation topics do they enjoy?

• What conversation topics do they not enjoy?

• What food do they like & dislike?

• Do they have a faith and how do they practice it?

• What are their values? What is really important to them?

• What stresses them?

• What motivates them?

• What challenges them or what problems do they encounter on a daily basis? (personal, physical, emotional etc)

• What best supports them overcome their challenges? 

When you've got a sense of all this you know now what you are looking for and are far better placed to find appropriate full time care.

Moving my curiosity on to care homes...things I'll watch out for and ask in future include:

Do they encourage visiting at any time? If not, why not?  I think most prefer you avoid meal times however, in the one my mum was at several of the residents were put at tables alone - something my mum doesn't enjoy so knowing what you know about your loved person, arrange your visits to check out things that are important to them.

Does the home look well kept and smell fresh? Care homes DO NOT need to smell like pee.  Accidents happen and they should be cleaned up quickly.  Residents should be bathed or showered regularly - no excuses.

Are you and your loved one comfortable with the standard of the rooms?

How easy is it for your loved one to navigate from their room to different areas? Is there good signage?  Does it make sense to you?  Do the lifts work?

How many residents live there? Refer this back to the environment your loved one thrives in

What are the needs of the other residents? Are they at a similar level as your loved one?  If the needs of the residents or your loved one are significant enough that socialising will be difficult bear in mind the staff/volunteer support available.

What is the staff:resident ratio during the day & at night? Is staff supplemented by volunteers? How so?

How many staff are employed there?  How long have they worked there?  Do they recruit often?  If turnover is high...why?

What is the staff training programme like? What understanding do staff have of your loved ones support needs?

What activities are available? When do they happen?  Where do they happen? How do they happen?  What size of group? How many helpers is there?  Is there 1:1 time/support?  Ask when there last 3 trips were.  The care home mum was in spoke a great game of activities but in 5 weeks she had none.

How do they allocate key workers? What are their responsibilities?  What 1:1 time do they have for their resident?  How is this spent?  How often is it? 

What services are provided in the home? Podiatry, hairdresser...do these cater for your loved ones preferences and needs?

What nursing support is available? Does your loved person need it now or are they likely to in the future.  For example, my mum doesn't need nursing care now but she does have bladder cancer and potentially if this gets symptomatic she will need nursing care...would she have to move to a nursing home or could her nursing care be attended to at this home?

How do they involve residents families in residents care/activities? 

Where can visitors spend time with the resident? In mums care home me & my brother felt ill at ease visiting with our kids and were asked to leave the living room on occasion.

Do staff acknowledge you? Caring is ALL about people skills - if the people looking after your loved one don't naturally say hello to you, personally I call into question how they will be with the residents.  How do they make you feel? 

Is there a security lock on both back and front doors to prevent resident wandering? It's all very well having security procedures but how well are they used?

How do staff keep track of where residents are? One place my mum stays in for respite has alarms on the bedroom doors so if a resident wanders the staff immediately know.

Is the notice board up to date?  Yes, work can be busy but if it's really out of date it could be a sign of letting things slip.

What do other people say about the home? residents, families, social work, doctors.  Get opinions.  And trust your gut - always. 

Mum will likely need to live in a care home at some point so this is my list to keep me right.  If you've got insight into choosing a care home please share - you'll be helping give the heads up to me and maybe other folk too xx

Dementia and children

Callum, our eldest is 14 (just) and our girls are 6 &  7 years old.  Mum has had dementia for around 5 years so far and it seems that Callum is etched in her memory while she forgets who Cara & Heather are.  It's strange.

And most of the time mum doesn't remember that she is my mum so by default...who the heck are these children?  They are definitely not her grand children (a lot of the time she doesn't remember having had any children) so she tends to think that she is living in a boarding school and she is their teacher. It makes for interesting and slightly confusing conversations!

I knew that mum living with us would affect the kids in both positive and negative ways.  For the positive, I hoped that we would be creating a good example of how to look after your own family, to experience getting older and appreciate that it is just part of life, to appreciate ill health in order to appreciate good health, to learn about looking after others and for our wider family to come together so they would benefit from a closer relationship with them.  And I think for most of that they have got...

For the 'negative' stuff, I expected it to curtail our life a bit as we can lo longer just jump on our bikes and go out or nip to the park. It involves arranging care or convincing mum to come with us (both not as straightforward and forthcoming as I had first hoped).  I didn't expect mum to call out so much and sleep as little and this has meant that sometimes I'm running on empty which is rubbish for the kids, and John, and mum and me!  This is less of an issue now we have formal care in place but for the first 6 months of mum living with us it was REALLY tough. She can wander during the night and wakes the kids up and she can be rude and demanding which is hard but for the most part this is directed at me & John.  There have been moments both of us aren't proud of when we weren't resourceful and we did get angry at mum. But I'm a believer in apologizing and explaining I guess an unexpected lesson for the kids has been witnessing us at our worst but getting ideas of how to manage stressful situations and knowing that we come through it, always.  Parents are people too!  I hope that they are more comfortable and confident with their own boo boos as a result of being party to ours.

Having mum with us has brought out the kids personalities which is great to see.  Heather is a natural carer and will take mums hand and take her to her room or help her on with her cardigan.  She also does the most amazing impression of mum sleeping!  Cara is more reserved and slightly awkward and unsure and Callum is brilliant with her given mum calls him quite a lot. Like Cara, he's a quieter soul so we don't find him gabbing away to her but he does keep her in cups of tea.

It's a big thing having gran live with us - I wonder what they'll remember of this time and how it will influence what they do and how they see the world.

Dementia is a funny disease, and that's what we focus on, in a laughing with, not laughing at, way.  It brings with it challenges that are very much like raising small children...without the cute effect.  Biology made young things cute to bring out our caring nature to make sure youth is nurtured.  Old people aren't all that cute. And kids grow up and out of their innocent and frustrating habits...mum isn't likely to - what we've got just now is as good as it's going to get.  

Simple pleasures

This was back last year before mum came to live with us.  Savouring the little moments at a wee lunch out with mum & the kids.

Me: What's been the best bit of today?
Mum: A hard chair and a hot cup of tea.

If mum has taught me anything it's definitely to appreciate the small things.  And everything wonderful started off small x

Love: March 12th 2014 #mumism

Another wee mumism....

Mum: You look after me like I'm your own mother.

How many kids?!! March 10th 2014 #mumism

Mumism of the evening...

Mum: So how have you found living with the kids this past year?
Me: (mmmm...how do I play this one?) I've always lived with them, I'm their mum
Mum: What??!! All 30 of them??

Chuckle...mum sometimes thinks she's living in a boarding school & we're the teachers :-)

Council care vs Kim

We have recently hired a fabulous lady as a carer for mum. And she rocks!  We now have routine and mum has 1:1 attention from someone other than me on a regular basis.  It took 6 months to get here and it's brilliant.  I decided to used to self directed services through social work rather than continue using the councils own provision.  This means mum is given a budget and she gets to spend it on care that meets her specific needs.  We could use it to hire agency care staff, employ our own staff and pay for daycare and respite services.

We hired Kim.  And now every week day she comes at a set time and blethers with mum, makes sure she gets properly washed and dressed, cleans her room (I know - this is an amazing brucie bonus!) and generally makes sure mum is more than ok.  When I have work on, she spends the day with her (I no longer have to prowl around for favours).  And mum loves her.  She even remembers her name.

Life before Kim was very different and not in a good way.

We used the councils homecare services and most of the carers were amazing, but the system they have to work with is far from it.

Time:
Mum was allocated 30 minutes in the morning & evening but most often the carers would be in and out in 15 minutes.  For most, this wasn't through malice rather through really big care runs and the nature of the job meaning some clients take longer than others and issues sometimes arising.  It's a tough one for them to manage but mum doesn't do well under pressure and often wouldn't get up when the carer arrived.

Routine:
What I know now is that routine is key for mum and apparently most people with dementia.  It's difficult to have routine when a carer can turn up any time between 9 & 12 in the morning and 7 & 10 at night. For 15 minutes.  Their help was greatly appreciated as while I'm perfectly able and prepared to wash mum, empty her commode and get her dressed, not having to do this was great.  But trying to get and stay organised around such a loose schedule was tough.

Social care:
Homecare staff only do personal care. Other agencies have to be brought in to provide conversation and activities for mum which means involving even more people and organising an even more complex schedule that still isn't full flexible.

So that's the background to Kim starting. And it's clear that in the council care vs Kim....Kim is the gold star winner. She properly rocks!

Wrapping up warm: Feb 14 2014 #mumism

Todays mumism made me chuckle. We were out for a wee bit of fresh air and I was wrapping her up & tucking her into her wheelchair...

Mum: For goodness sake will you stop it - people with think I'm your aged mother!
Me: Or maybe just my mum?
Mum: Don't be daft you're near enough my age

Juggling: February 8th 2014 #mumism

Tonights mumism...after a erm challenging evening of trying to get her to come home. It's tough visiting dad sometimes as because mum used to live there she still feels it's home. The thing I find most difficult is respecting her feelings while at the same time having other things that really need done - like picking the kids up.  Because mum doesn't remember that she doesn't live there anymore so doesn't understand why she has to come with me and so clearly, in her mind, I've a bee in my bonnet and it's not her problem!

Mum: I hope to god my daughters don't turn out like you!

Sometimes all you can do is laugh...we got her home and she's snug as a bug and forgotten all about me being the cow from hell now.  Tomorrow is another day...

Being Grumpy

I am tired and grumpy. The end. Pfft.

Acceptance : January 12th 2014 #mumism

Todays mumisms quite touching. She's the woman who taught me through example about acceptance.

Mum: I don't think I'll have any children

Me: Why not?

Mum: My age mainly...I'd like to have children but I'm not going to set myself up and be disappointed. If it happens, it happens.

Bless her...if only she knew xx

Respite funsies: January 3rd 2014 #mumism

We're off for some weekend respite funsies...

Me: come on and well get ready to go out.
Mum: where to?
Me: to an activity place for older people
Mum: for people over 60?
Me: Yip
Mum: Oh no, Im not over 60

Back to the drawing board