Dementia: Burnt Out Carer

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I am posting at this ridiculous hour as I have just taken my second antibiotic.  I have a chronic sinus infection.  My nose is dripping like a tap and I feel pretty rough.  There  is no way I am capable of looking after Maureen at the moment, and I have just informed socail service accordingly.A sinus illustration overlay of a woman with sinus pain.

The events of yesterday evening were a stark reminder of Maureen’s presentation.  I had to be at my best to keep within the bounds of  compassionate communication: on a couple of occasions I lost it.  There is only so much you can take when you are not feeling 100%.  In short, Maureen is completely confused by me being unwell and has forgotten how to be a  nurse to her ailing husband.

This will all be a real test of social services ability to respond to a mini emergency.  It goes without saying my plans for the weekend have gone out the window.  Yet again I won’t get to see my family and it is not entirely my own fault: I have been flagging up my tiredness for quite some time.  

Setting up arrangements for respite supports Care Partners – not visits from professional staff who nod their heads, and keep telling you they: ‘I hear what you say’.

Dementia: Musical Orientation

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I think it is possible to use music to help Maureen sort out the time of day.  This should help to ground her when she  wakes up in the morning, and after a siesta.

When she wanted me to put Star on the other morning it helped ease her through getting dressed.  She seemed to find it easier to find comforable clothing after singing along to Christie Hennessy, and others on her list of requests.  It is simple to accommodate any music she fancies in the morning as YouTube is so close by.

My cunning plan in the evening is to use our record player.  It worked very well last night with lovely singing along to Barbra Streisand  I am hoping that our after tea ‘jammimg session’ will  bringing her back to earth in terms of time.  It also offers lot of other possibilites.

Our vinyl is all over the place and requires sorting.  So although I am going to be the D J it will be a ‘Request Show’: Maureen selects, and I will put on the  records.  That means she will have to trawl through L P’s that are in no particular order.  If I know my woman well she will eventually put the records into some sort of order.  Goodness knows what system she will use but I am fairly confident she will come up with something to simplify her searches in the future.

Most of this sounds ambitious but there is nothing to lose.  As a minimum if we run with music in the evening it will be a fun way of spending time.  Anything else that I can conjour up with  ‘Raves from the Grave’ has to be a bonus.  Just to take a ‘rain check’: Maureen mentoined that all her records are still at her parents house in Nottingham.  She has even forgotten that the place she is talking off fell a victim to redevelopment years ago.  Never mind let the music play!

Dementia: Avoiding Carer Burnout

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When I saw my G P yesterday he assured me that he didn’t suspect anything sinister in my symptoms.  He also advised me to: ‘take one day at a time’.   I have a great deal of repect for Dr Sibtain for his support to me; as a patient, and in my role as Facilitator of the Practice’s Anxiety and Depression Group.  So I take his advice very seriously, and wonder if it is similar to: ‘going with the flow’.  However, I am not comforable with what appears to be behind either of these approaches: an unhelpful medical model.

I believe that there is room for a psycho-social approach to dementia.  One that offers hope: rather than watching decline. Sitting back and going with the flow, by taking one day at a time, has never been a way I have approached life.  Any perusal of my C V would indicate involvement in initiatives to bring about change.  I see no reason to adopt any other approach to my role as Care Partner to Maureen. The challenge I now face is to modify my psycho-social model, so that the potential for burn-out is reduced.

Some form of respite has to be an immediate priority.  Again my approach may be unconventional but our Nottingham experience  supports my assertion that a progressive approach to respite has untold benefits.  That doesn’t mean that Maureen and I have to be joined at the hip.  But leaving her in the company of strangers while I ‘hop off’ for a couple of days is not an option.  My plans for the coming weekend may have  to be revised based on the information I received from our social worker yesterday.   It seems that there are no familar faces available for the weekend.  So urgent discussions will need to  take place today, to try to fathom a supportive way forward.

Some have argued that I am a victim of my driven approach to being a Care Partner.  It is possible that I need to review my approach to supporting Maureen.  I am hoping the 7 tricks reproduced from an article in Alz Live will help to modify my approach and improve our journey from now on :

‘How one smart cookie demonstrates 7 tricks to smoothe communication, when offering tea.

10:30 sharp. Green cup with the cracked glaze. Half teaspoon sugar, half teaspoon Equal. That’s how Miss Johnson takes her tea every morning.

When someone suffers from Alzheimer’s disease, there are a million potential obstacles that can turn simple daily rituals like this one into a real challenge for caregivers.

I thought it would be helpful to look at the ins and outs of caregiving through the lens of a daily ritual, to keep something as harmless as morning tea from growing into a monumental exercise in frustration.

Gale Storm, a nurse and manager of education for home health aides at Partners in Care, where I work, offers this compassionate rendition of how a caregiver might smoothly and successfully begin the daily tea ritual:

The Scene

Miss Johnson [name changed], I’ve been with you for two weeks as your home health aide.

I’m Sandy. You remember.

I notice you like your tea at 10:30, in this green cup. I think I can get the sugar-and-Equal amounts right. Is that how you’d like it this morning?

The Takeaway

Tucked into this simple exchange (which very few of us in the crossfire of caregiving will ever get perfect) are seven tricks of the trade.

Sometimes the other person needs time to think … You don’t have to fill all the silences.

1. Emphasize familiarity.

I’m Sandy, I visit you every day… Take every opportunity to reorient the client or loved one to person, place and time. This breeds familiarity and a sense of safety, paramount to a person with dementia. Even with a family member, a dementia patient benefits from simple reminders.

2. Be observant.

In the conversation about Miss Johnson’s tea, the aide introduced the morning ritual by saying, “I notice.” Because familiarity can soften the agitation of dementia, successful caregiving depends on careful observation. Observe favorite foods so you can maintain a successful menu. By the same token, observe whether the person you’re caring for prefers variety in day-to-day meals.

3. Practice good communication.

Active listening and touching on different points can be helpful as a conversation loops around again and again. Clarification and rewording the question go a long way, too. It helps to remember that you can pause in the course of conversation as well. “Sometimes the other person needs time to think,” says Gale Storm. “So give them that chance. You don’t have to fill all the silences.”

4. Seek input.

Asking for your loved one’s input helps foster engagement and dignity. Give suggestions — It’s 84 degrees and humid, so let’s wear short sleeves — but let the elder have a say in which shirt, which light skirt.

5. Let go of expectations.

Gale points out that just because Miss Johnson has had her tea this way every morning for two weeks does not mean she will want it that way today. Alzheimer’s is a disease that keeps confounding expectations. Levels of memory loss and lucidity can fluctuate greatly.

6. Be aware of your tone and facial expressions.

He or she will always respond to tone of voice or facial expression — the very things a well-meaning but stressed caregiver might overlook. Even if you have to fake it till you make it, try to keep an encouraging tone to your voice and smile.

7. Know when to walk away.

If a situation has become combative or overwhelming, take a deep breath and step away (making sure the situation is safe to leave, of course). As Gale notes, “Taking three minutes to go into the rest room is a perfectly reasonable thing to do.”

Marki Flannery, who wrote this piece, is president of Partners in Care, the largest licensed home care services agency in the greater New York City area. This feature was originally posted on Huffington Post.’ 

 If I keep these 7 points in mind they may help to reduce the chances of Burnout.  There also needs to be a progressive approach to respite at the weekend, to avoid Maureen being left with strangers.

Dementia: Two Mothers Remembered

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My sister, Barbara, kindly forwarded this beautiful poem to me today.  She has sent it at such a good time: as I will be with my mum on Saturday.  I am sure that sons could be substituted for daughters to convey the same sentiments.

I hope my mum still recognises me after all this time.  It is doubtful that my brother will but he did say my name the last time I visited hin in his Nursing Home.

It will be interesting to see how they respond to music: Frank Sinatra for mum; Bill Hayley for John.   Mum will tap her feet I’m sure but I don’t expect John will be able to show how good he was jiving.  I wonder if he would take his wife by the hand if I take her along?  There’s only one way to find out.

I’m really looking forward to seeing them both.

Poem: Two Mothers Remembered

Dementia: Musical Magic

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It is clear that music is a good way of providing cognitive stimulation for Maureen.  On Monday it made a good start to her day:  taking some of the sting out of the search for comfortable clothing.  In the evening she sang like a lark to some of her old records.  So I repeated the early morning routine today, and plan to have a musical evening tonight after tea.

I can hear Maureen singing away as I type this entry to my blog.  As I have said before she is a ‘home bird’ and attending events like ‘Singing For the Brain’ are not her cup of tea.  My approach to integrating individual cognitive stimulation, has to have advantages over sitting down with others for an hour or two once a week.   As I have blogged before Maureen prefers IICST to ICST.  I do not understand why the typical approach to dementia is pulling people together in all sorts of groups.  Cognitive stimulation begins at home: it should be integrated into daily living.

Tomorrow I hope to develop our musical interludes even further.  I think it is possible to build all sorts of other stimulating activities around music.   More detail tomorrow as I’m in a bit of a rush, as I have to see my G P at noon.

Dementia: Facing Carer-Burn Out?

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This will be a very short post as I need to see my G P this morning.  I need some advice to help me improve my sleep pattern.  Although when your wife is confused over time that does not help.  Poertry recitals at 4 am in the morning are pleasant but not if it is difficult to get back to sleep afterwards.  One of my tasks this morning is to help Maureen trace the remaining verses of:  ‘I Remember’ or whatever it was she wanted to recite well before dawn.

My other problem is, once again, my digestive tract .  My saliva contained rather a lot of blood this morning.  I have to confess as soon as this, ongoing problem, goes away I forget to take the Gaviscon that was prescribed  a some time ago.

As I have mentioned before our Medical Centre has an excellent system for triage, and appointments.  It is reassuring that I know I will be seen this morning.  It looks like my body is trying to tell me something and significant carer burn-out is looming unless something is done pretty soon.

Musicophilia and Dementia

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Sometimes I manage to seize the moment and really good things happen here.  This morning Maureen was struggling, once again, to find clothes that she was comfortable in.  So I asked how I could help? and She said play Star by Kristie Hennessy for me.  Not a difficult task with YouTube available in the next room.  What followed was simply amazing.

Maureen sang along to what has become one of her favourite songs.  She then bet me I couldn’t find a Bing Crosby, then a Joan Baez number, and on it went.  The change in her mood was immediate and the problems of finding clothes became a distant memory.  I am now wondering how much more I can use music as a vehicle for positive change.

I have seen, with my own eyes, how music can lift mood.  I just have a sneaky feeling it can also provide cognitive stimulation and open new pathways in the brain.  I’d better get  that book out of the library: Musicophilia, that one of my friends recommended, and I never got round to reading.

Note: 

I had intened to Blog on this front in the morning.  I have posted it now because I must improve my sleep pattern.  This means staying in bed much later in the morning.  One thing I am going to do is keep my computer switched off from 8 pm at night until 10 am in the morning.  If I don’t get more sleep soon I will collapse.  This is just one of the measures I am going to take to try to improve my sleep pattern.

Dementia: A Caregivers’ Prayer

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Today is the start of an important week in my role as Care Partner to Maureen.  On Saturday I aim to be on my way to see family.  I am hoping that arrangements are in hand for Maureen to be well cared for while I get to  see my folks, and have much needed break.

It has not been easy to secure respite in the past.  So I thought it a good time to reflect on the sentiments of  the Caregiver’s Prayer, that follows.  I just hope, and pray, that this time my plans are not frustrated by the inability of others to make the necessary arrangements.  I think that three weeks is a reasonable amount of notice, for our social worker, to arrange around the clock care for Maureen.

The following passages are reproduced from the Alz Live Newsletter.: 

‘There’s a neat little 12-step “prayer,” that is the Mother’s Little Helper of caregiving.

It pops up on websites and blogs; people pass it along to their friends who are looking after someone with dementia or Alzheimer’s.

Fridge-worthy? It might be. It was written by Carol J. Farran, DNSc, RN, and Eleanore Keane-Hagerty, MA, in 1989 and printed in The American Journal of Alzheimer”s Care and Related Disorders & Research’.

12 Steps for Caregivers

Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me and my relative. I need to:

  • Take care of myself so that I can continue doing the things that are most important.
  • Simplify my lifestyle so that my time and energy are available for things that are really important at this time.
  • Cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
  • Take one day at a time rather than worry about what may or may not happen in the future.
  • Structure my day, because a consistent schedule makes life easier for me and my relative.
  • Have a sense of humor, because laughter helps to put things in a more positive perspective.
  • Remember that my relative is not being “difficult” on purpose, rather that his/her behavior and emotions are distorted by the illness.
  • Focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
  • Increasingly depend upon other relationships for love and support.
  • Frequently remind myself that I am doing the best that I can at this very moment.
  • Draw upon the Higher Power, which I believe is available to me.’
Reprinted from The American Journal of Alzheimer”s Care and Related Disorders & Research, November/December, 1989, 4(6), 38-41.

Dementia: Care Partner@confused.com

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If I wanted a new EMail address that reflected my mode, at this moment in time, it would be Care Partner@confused.com.  My reading of conventional wisdom leaves me uncertain on the way forward after our little break in Nottingham .  The physical consequence of our trip as far as Maureen is concerned is total exhaustion.  To put it in Maureen’s words: she has felt ‘wiped out’ since our return from her home town.

There are lots of catch phrases thrown around once a diagnosis of dementia has been made.  ‘Use it or lose’ it has parlance amongst the experts.  I am just wondering if we have overdone it?  Have we done too much in one go, and what are the long term consequences?

Maureen is an outdoor bird.  As soon as she is down in the morning windows, and doors, are opened.  If conditions are favourable she will be out in the garden ‘stretching her leg’.  She always recites Dr Stead’s mantra: ‘to keep walking’; to address the discomfort in her left leg.  Since our return from Nottingham she has been too tired to venture any further than the garden.  Her trips outside have been to; put washing on the line, and occasional inspection of the garden.  She is simply too tired to do much else.

I think it is obvious that the trip to Nottingham has taken a significant toll on Maureen’s physical and mental capacity. Three days on and some of the memories associated with the trip have faded.  She became very upset last night: thinking she had not seen her sister.  We spent a couple of hours in the company of Val.  Maureen even invited her ‘little sister’ up to Cleethorpes, as she thought  a  short break would help the loneliness of Val’s life in Nottingham.  She has plans to write to Val today, and apologise that we didn’t get over to see her.

The issue I need to resolve is if our little trip has been in Maureen’s long term interest.  Has the herculean effort on Maureen’s behalf supported recovery or has it increased the rate of  decline?  It is something I need to come to a conclusion on if our pursuits in the future are to have a postive impact on Maureen’s welfare.

Our journey a little further afield than Immingham has pleased several family members.  However, our agenda is not to keep others happy: it is to be clear about what is in Maureen’s long term interests.  How fortunate that Mel my new Admiral Nurse starts today.  I will also pop along to our local chemist and chat things over with Evonna.  I can also seek Tracey, our social worker’s opinion, as I am sure she will be in touch today to confirm arrangements for the weekend.

Many hands make light work!

Dementia: ‘Do You Remember?’

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There is a steep learning curve to be traversed once you become a Care Partner.  One of the key lessons t is never ask a question that is concerned with the memory of your loved one.  So phrases like : ‘do you remember?’ are a distinct no no.

Unfortunately during our little break in Nottingham the phrase ‘do you remember?’ often infected conversation .  That was inevitable with family members getting together to share their past.  On occasions, as we visited old haunts, her brother frequently posed the question.   I decided not to intervene as I heard Maureen convince herself that things had changed, and that is why she couldn’t remember.

You can be sure I will never play Do You Remember by the Scaffold even if it was amongst our vinyl!