Showing posts with label dementia care. Show all posts
Showing posts with label dementia care. Show all posts

Tuesday, 25 March 2014

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


Monday, 24 March 2014

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.