How strange this is something that Maureen and I have always said at Christmas. It is more pertinent than ever this year!
One of the things that I need to do over the next few days is to review our daily routines. I also need to watch what buttons I press on the keyboard as I have posted this a couple of hours too early!
The article that follows is something that should be helpful as I try to work out what works best here:
‘By Bob DeMarco Alzheimer’s Reading Room Establish a Daily Routine Nothing is more important than the daily routine. Persons afflicted with dementia do not have a good sense of time. As a result, they tend to fall out of the daily routine they used before the diagnosis. You can look back to what it was they were use to doing; and then, incorporate some of those things into their daily routine. As you establish a routine take it one step at a time. Eventually you should come up with a routine that covers the entire day. Do the same thing, at the same time, every day when possible. If your love one read the newspaper in the morning, organize the newspaper and put it in front of them. Ask them to read to you from the newspaper. If your loved one went to the store at a certain time of the day – take them to the store. You should get out and around every day. Walking is good if they can do it, and the weather permits. A ride in the car is always good. Talk about the scenery or whatever you can. Keep you loved one engaged in conversation. Think about what your loved one liked to do. Then go do it. If you need to modify the daily routine a bit for them, modify it. Make things more simple to do if necessary. Incorporate Activities into Your Day If you incorporate activities into your day –
This will set you free.
The more activities the happier the afflicted becomes, and the happier you become’
Maureen became very concerned last night that she didn’t remember who I was. She was reluctant to go to bed because she thought she was waiting for her husband to come home. Just as I was tucking her up for the night she asked me what was wrong with her? She was worried that she might need to go back to hospital as, once again, she had lost her memory. A short while afterwards I heard her crying in bed about all the people who had died: her son, daughter, mother and dad.
I think spending the afternoon with Maeve reminded Maureen how much she missed Denise, her daughter. As she sobbed she mentioned that she wanted to move on. I think the time has arrived for me to once agai discuss this matter with professional staff.
My strategy for the remainder of the week is to have a quiet time following a busy few days. Therefore, I will let Christmas pass very quietly, and minimise any external contact. The land line will remain off unless Maureen shows concern about lack of contact from her family.
When I was in Coventry on Monday I managed to confirm that Maeve our own Songbird would be here today. 
I met Tom, her dad, in the Red Lion and we chatted about things, and their impending visit. Maureen was thrilled when I told her that she would be seeing Maeve today, even though she will remind Maureen of the gap in her life since Denise died.
I think I am going to go for it today on a number of fronts. Maeve’s presence gives Maureen an opportunity to relive happy events from her past. If the going is good I will encourage Maureen to trim up for Christmas. I’m sure that decorating our house – even at this late stage – may well help to bring back such lovely memories for Maureen. I have already marked Tom’s card on this front and hope Maeve will be compliant.
Today might also be an opportunity for a bit of forward planning. When Denise was alive, her and Maeve were regular visitors to our house. It was unusual if we didn’t see them every six weeks or so. Maureen really misses Maeve and the happy memories of Denise. It would really help if we could sort out the next time we will see them before they leave.
It looks like an interesting day ahead with all sorts of possibilities. I think I read somewhere that with dementia around strategies were more helpful than plans. I’ll let you know tomorrow how my strategies work out……
I’m back sooner than expected as Maureen is in panic at the prospect of today’s visit. She doesn’t want Maeve to see her looking a mess, and a clothing crisis is underway: nothing fits once gain. I need to be at my level best to sort this one out. I have disconnected the landline to avoid any further clumsy interventions in our lives.
I think the first song Maeve ever posted on YouTube sums it all up: Panic Chord.
I found it really difficult to get back into the swing of things yesterday, after my day trip to Coventry. It reminded me of the first day back on the shop floor of the car industry after a holiday. I could almost ‘smell the suds as I put on my overalls’, after just a day away from being a Care Partner. Yesterday, it was coming back to the complexities of dementia, and the aftermath of my desertion: no suds to contend with but it still stank!
Early this morning the level of Maureen’s confusion hit me head on. She made some enquiry about ‘this house’. My response led her to say: ‘how could I have sold my house in Coventry? I wouldn’t have known how to do it, and my son wouldn’t have allowed me to’. Once again contact with her sons has added to her confusion: a visit form one on Monday and a long phone call from his brother yesterday.
Maureen is unable to change much about her presentation: dementia is in control for most of the time. However, after a day away I had forgotten how draining and challenging my role as a Care Partner has become. It is easy to ‘forgive’ my lovely wife: there is little she can do about her condition. I can’t make the same excuses for her sons: they just ‘don’t get it’. They ignore my advice and continue with interactions that add to Maureen’s confusion: it’s time to talk to them about the consequences of their interactions. I think I will have a chat with my Admiral Nurse about this before she breaks up for Christmas.
Away days like yesterday are going to be a common feature of my life from now on. However, there are certain things to be sorted out before I set out again in a couple of weeks-time:
It is really important to avoid a repeat of yesterday. Maureen needs to continue with her normal routines in my absence. She needs a reasonable mix of stimulation and rest. Her food needs to be of a good nutritional standard. Medication needs to be offered and taken.
It is inevitable that there would be teething problems as we begin this new stage of our journey. We all need to move on and as they say: ‘Practice Makes Perfect’.
I began writing this blog at 10.30 last night to start looking back on my away day in Coventry. It had been a tiring day and I haven’t really pleased my mum or my wife.
My journey began at 7.10am yesterday morning, and I returned home at 9.15pm. It’s a round trip of 230 miles from Cleethorpes to Coventry and I travelled by travelled by coach, and local bus. We made good time, and I was sitting beside mum in her Care Home by 11.40 am.
Her repetitive questioning about: ‘had I come in the car’ was a constant theme of the hour we spent together. I soon gathered that she was angling to be taken out for a ride in the surrounding countryside. My sisters report that mum often switches off, and goes to sleep when a short drive is not on the cards.
My idea of using music went well, and we sang along to some Festive tunes from my phone. Mum tapped her feet and really enjoyed our little sing along. She was reluctant to move from ‘her chair’ and that caused upset for one resident that a ‘man was in the house’.
As short as my visit was it gave mum a break from watching random TV that provides a meaningless backdrop to her life. Staff seemed to be busy meeting the individual needs of residents, and gazing at the screen seemed to be the option for mum: little surprise she was dozing when I arrived.
I had a lovely lunch with several family members at a local pub. Service was slow and that meant I didn’t manage to get to see my brother as his Nursing Home is the other side of the city.
I was not well received on my return home. Maureen was confused by the events of the day, and had no recollection that her son has been here. The cold shoulder was applied in a blatant fashion, and Maureen was reluctant to go to bed insisting on sleeping on the sofa. I managed to persuade her upstairs at 11.30 pm but she didn’t want me in the same bed and I took my place in the Dog House – the spare bedroom. I managed to join her in the marital bed early in the morning when I could hear her moving next door, and I feigned a return from a visit to the bathroom.
It is fully understandable that I am in the Dog House. My mum loves to go for a ride in the car: I didn’t take her. Maureen had been left with strangers all day: I had deserted her and her normal routines had been disrupted. What else can I expect when dementia means that my mum and wife now focus exclusively on their own needs?
One of the things I’m continually trying to do is grasp what it is like for Maureen living with dementia. I feel the: anger, frustration, fear, and anguish on a daily basis. Maureen still says: ‘she lost her memory once’, and she has probably forgotten her diagnosis of vascular dementia. Therefore, she doesn’t talk about her fears and concerns. So I try to understand what it might be like for her by reading accounts of those who write about their condition, and Norrms put it like this:
‘TORMENTED
BY
CHRISTMAS PAST
AND FEAR OF
CHRISTMAS FUTURE
This time of year is such a confusing time of year, not just for myself, living with dementia, but also for others and their carer`s and loved ones. I try to look back and try to remember what’s happened this year, as I start to look into the mirror and take a cold hard look at myself, and this awful illness, the two are now linked forever unfortunately. I see staring back, a different man from 12 months ago, ( I think, it’s at this point I look at old photo`s ) Is it only me that can see that blankness creeping into my eyes, that disassociation draining from my pupils, or is that just my Illness? Is it ME looking back at ME? Or is it Lewy Body’s, smirking behind my smile, laughing at me, tormenting me, taunting me of what’s yet to come?
Thoughts come into my mind, happy thoughts, of things achieved, things completed and of things yet to come, until that is, Lewy Body`s walks into the same room in my mind and reminds me of the struggle it has been, the sleepless nights, The hallucinations, The Night terrors and the Horrors of What Lewy Body`s imposes on my family and I on a daily Basis.
It’s at this point the tears start to fall and the feeling of hopelessness envelopes my whole body and mind. As they subside and I wipe away the tears, thoughts turn to next year, well it’s only a couple of weeks away. I always like to say, one minute I was watching Space 1999 and the next I was transported into the year 2015, with not that much knowledge of what happened in-between!! And so to next year……………….
2016 WOW!! Just saying that sounds so very strange to me, dates, times and months don’t come that easy to me these days, but as we all know, time and tide waits for no man / woman, unfortunately, neither does Dementia. If I am very honest, I am dreading the 31st March!! Not the 19th as that’s WRAD World Rocks against dementia day, but what about after that? What about when I retire and try to fill my days with other things except the disease that has ruled my life for the last eight years and will end my life if no cure is found?? How do I fill that gap? Most worrying?
Yes of course I am looking forward to spending my time with my “Angel” Elaine, and yes I am so looking forward to spending more time fishing and gardening, with my kids and going on holiday, but at the end of the day, Lewy Body`s will always be there, chip chip chipping away at my family and I. So as you can see, the New Year can be such a confusing time for people like me and their families. So many family members out there must think exactly the same, have the same fears, the same worries, and so many out there with this disease must also think this, even if they cannot speak this.
All that comes to mind at the moment is
DAY BY DAY is all we can hope for, hope this helps
Norrms Mc Namara Diagnosed with dementia 8 years ago aged 50′
Today’s blog is much earlier than normal as I will be leaving for Coventry shortly.
There are several opportunities today that are too good to miss, both on the home front and in Coventry. The home banker is that with Ian, Maureen’s son, here she will be more amenable on several fronts.
Maureen’s resistance to having a shower and her hair washed is likely to melt away, as she will want to look her best for her son. It is also possible that her enthusiasm for trimming up for Christmas will return with her lad by her side. Furthermore, the foot that has been too cold to go outside the door is likely to warm up as soon as she sees his face. There is no point in getting irritated about this change of demeanour because dementia creates such a transformation in behaviour as outlined in this article.
Coventry offers me an opportunity to consider the life in a Residential Home. Once my dad died my mum simply couldn’t cope home alone. Her choice of a small Nursing Home for ladies is fully understandable, as is the loss of her mobility. Chair bound for most of the day it isn’t surprising she is needing a frame to get around safely. The other issue for her is that several of her fellow inmates have developed challenging behaviour and her environment is far from peaceful: she asked my sister to: ‘get me out of here’ on a recent visit. However, mum’s residence is serene compared to what goes on a daily basis in John’s Nursing Home.
John ended up on Continuing Health Care after an unfortunate incident when he had been left at a Respite Centre. His challenging behaviour led to a Section and a ‘chemical cosh’ so that staff could gain his compliance. It is probable that John would have been in his own home for much longer if his wife had been given the support she needed. Desperate for respite from his challenging behaviour she left him in unfamiliar surroundings and the rest is history.
Seeing my mum and brother in their Homes always makes me pensive. I don’t find their surroundings an attractive prospect for either of us. If at all possible we would want to remain together in our own home until death do us part. That may well involve having substantial support in our current home or moving to some sort of sheltered living accommodation.
Great news I did it: brought Maureen back into the here
and now with music. I played Ali Campbells’s concert at the Royal Albert Hall and Pato Banton did the trick with Baby Come Back .I think it brought back those wonderful memories of concerts at the National Exhibition Centre and Institute in Birmingham.
I had already plied her with Red Red Wine before Ali got to that number. It’s not surprising that she has ben ‘time travelling’ back to the past when I think of all the old stuff we have been playing lately. Ali and Pato rule here along with Oliver Sachs: never mind Elaine Paige.
