I may have thrown a further spanner in the works this morning by
mentioning that Maureen’ son and grandson are on the way. Maureen’s initial reaction has been concern that she :’won’t know what to talk to them about’.
Perhaps I should have stuck to my original thinking and let it all be a surprise when they turned up. It may take more than a bit of singing along to YouTube to ease things along until their arrival in a couple of hours
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′
There is no doubt it: ‘we do have a problem at the moment’, and the worrying thing is it may be more than a temporary one.
It’s becoming abundantly clear that the times when Maureen is unclear who I am are becoming more frequent. Unfortunately, that problem is going to take on an even greater magnitude tomorrow when I am on a day trip to Coventry. Therefore I need to hurriedly put one or two things in place to attempt to reduce the potential for further distress.
The real problem arrives when Maureen thinks I am her previous husband. So I am going to concentrate today on putting even more things around that are ours, and remind her of the ‘good old days’. Perhaps looking at our wedding photos, and sorting out one or two albums of old haunts might help. I can also talk about and put on music that reminds her of the happy times we have spent together. However, I’m not quite sure what I can do about her son’s visit while I’m away.
In many ways it is unfortunate that Ian is coming tomorrow. Maureen often becomes more confused than ever after his visits: unsure who her husband is. After my holiday in Portugal last year she became convinced that his dad was returning, rather than me. As he stood with her at the railway station she looked a pitiful sight, almost unrecognisable, until she saw it was me coming off the platform. On another occasion she summoned the police because she said ‘there was a stranger in the house’ – it was me!
The Clinical Psychologist from the Stroke Team warned me to be very careful once Maureen began to confuse me with her previous husband. Being aware of the abusive nature of Maureen’s previous marriage she urged me to be very cautious about my behaviour. Therefore, I’m now being very careful about when I make physical contact with Maureen. How sad that in the present circumstances I have to check who Maureen thinks I am before can give her reassuring hug: if I get it wrong all I will do is cause further upset.
I have just returned from a short trip to the shops to find Maureen very distressed. When I found her in the bedroom she said: ‘I don’t know what I’m doing’. She went on to tell me that she became very frightened as she: ‘felt useless that she couldn’t do anything to help, and I was doing all this running around’. I have posted below an extract from an article by Bob DeMarco, that appeared in the Alzheimer’s Reading Room, to remind me why I can’t leave Maureen alone at the moment:
‘The simple facts are that at a certain point in the development of dementia, a person really cannot be left alone.
The easiest way to understand this is that dementia patients do not “cope” well when left alone.
You could ask yourself this question. If the person who is left alone is angry when you return, how do you think they might have been feeling while you were gone?
Do they feel,
Alzheimer’s patients are very fragile. As the disease develops they don’t have any real concept of time. To a person who is deeply forgetful 30 minutes might seem like an entire day.
For example, I might go to the store for 30 minutes and leave Dotty alone at home. She would be angry when I returned.
Later that night she might say to my sister Joanne, I don’t know where he goes, he goes out all day long. She said this even though I was only gone for 30 minutes I and I went to the store.
Clearly she had no understanding or any memory of how long I was gone, and why I was gone.
Dotty might also say, I don’t know what he is up to. This was code for Dotty thinking or believing I was going to put her in a “home”.
Like any feelings or emotions in any of us, if you let these type of thoughts build up over time it is likely that you are going to “lose” the dementia patient.
When I say “lose” what I really mean is lose their trust.
If they don’t trust, or if they stop trusting you, you are really in for some very miserable times. If an Alzheimer’s patient does not trust you they will become angry, irritable, challenging, and hard to deal with.
When this happens you both suffer the burden.
The person who is deeply forget becomes confused, then angry, and then they “act out”. You on the other hand get left with an upset stomach (agita), and a very sore heart.
That is the way it felt to me.
Some caregivers complain that they can’t get a minutes peace. That the person who is deeply forgetful follows them around, or constantly calls out for them when they cannot see them. Dotty did this all the time.
Let’s reverse field. Instead of “venting” and complaining about the behavior of a person that is deeply forgetful, let’s instead ask ourselves, why do they follow us around, why do they call out when they cannot see us?
The simplest answer to this question is because we are their lifeline.
We are the person they trust (maybe the only person). We are the person that keeps them attached to the real world.
Like it or not, you become the one person in the world that a person who is deeply forgetful can rely on and trust. You are the only person that can keep them from becoming confused, angry, and just downright scared.
After a certain point in time a person who is deeply forgetful gets scared when left alone. This in turns leads to all kinds of negative behaviors’.
It’s 4 am in the morning and I have decided that blogging may help me to sort a few things out.
There is a difference today as I know 
I haven’t woken myself up to blog. Once again I have been woken up by Maureen screaming: yelling out in fear that there is a stranger around. This time she was yelling to her dad that someone was walking down the passage. She didn’t see it as a dream as she asked me if I had heard their footsteps. It seems likely that there is far more to her current presentation than the infection that surfaced last week
In the last week or so Maureen’s levels of confusion have concerned those who see her on a regular basis. Yesterday, Chloe one of our regular carers commented on how confused Maureen was at the moment. It’s no longer just a question of Maureen asking Chloe the same questions time after time. There is far more to concern us than that. Yesterday, Maureen became completely confused on my whereabouts on several occasions. Unfortunately, her present levels of confusion are not being eased by the antibiotics, and no further treatment is required for her original infection.
I managed to have brief chat with Yvonna our chemist yesterday, and there are a number of possible explanations for Maureen’s increased level of confusion. It is possible it is evidence of further decline caused by dementia. On the other hand it could be explained by viral, or bacterial infections, or viruses. I’m hoping that it is something within the realms of the latter explanation. Only time will tell and a good diet along with the right amount of exercise and rest, are just what the doctor or chemist ordered.
I hope to catch up on some sleep later in the day. Unless I can get more sleep there is little hope of my leg or shoulder pain being solved. There is a price to be paid for concentrating on Maureen’s needs, and dementia may well mean that they are insatiable. It is time to tough it out and prioritise my own needs. If I don’t carer burn out is on the horizon, and that won’t help either of us.
My trip to Coventry on Monday offers some respite when I have a day to myself: albeit one with demands of its own; a tiring journey with an emotionally draining agenda. Seeing your mum with vascular dementia and brother with Alzheimer’s is hardly a picnic. However, the downward coach trip should offer some valuable thinking time: I need to have some sort of plan to break out of this Catch 22 situation I’m now in. In a nutshell: I can’t carry on like this!
As I messed up earlier with a 5 am posting I have decided on a little more today. I have already used a little music therapy to relax myself this morning. Someone Like You has been booming out from my Tablet and Smart T V: I am a recent convert to that fabulous woman.
I am going to see if music can help to ground Maureen today. What I have in mind is to put on those tunes that she used to sing along to 50 years ago whilst doing her housework. There is no doubt that this is usually a mood lifter. If things go well I will put on South Pacific and she will sing with gusto: ‘I’m going to wash that man right out of my hair’. That always makes her feel good: those who know her will ‘get the picture’.
My final plan in this musical journey is to put on some Festive Music. I want to see if Christmas can be moved into her mind set. I have a sneaking feeling that there are some very happy memories there that we might just tap into. In all of this I will proceed with caution because as my cyber friend Kate Swaffer says; ‘gently, genty catchee monkey’. That must be the Aussie in you Kate: Maureen always says ‘slowly’!
Despite our good news posted earlier, pain and discomfort are dominating our lives at the moment. My leg, and shoulder, pain is back with a vengance. Maureen’s discomfort and distress over clothing has returned. There is a simple solution to my difficulties but Maureen’s problems require some blue sky thinking.
It has been made abundantly clear to me that I need a bigger bum. Following bilateral hip replacement my glutes need building up. The solution is quite simple: to walk in water as a simple strengthening exercise. I haven’t been doing it lately and am paying the price. It is the same for the pain in my left shoulder: I haven’t made the time to do the exercise my physiotherapist recommended. There is a simple solution to get rid my pain; return to the Leisure Centre on a regular basis and resume my exercise routines. The solution for Maureen is not so obvious.
There were times yesterday when I felt completely impotent to help with her discomfort. None of the normal remedies worked and her distress continued. At one time I had to beg my sobbing wife to come out of the bathroom, so I could at least give her a hug. All her clothing seems tight at the moment, and even extending certain garments has not helped. It’s now time to put these issues before people who know Maureen.
Chloe, Girl Friday, will be here soon and she may be able to suggest a way forward. She has significant experience of working with those who have had stroke, followed by dementia. I will also run the issue by our social worker, and Admiral Nurse. Hopefully this will lead to something that could just relieve considerable distress at various times during the day. Just to be able to get through the day with clothes that feel comfortable, would be a real game changer for Maureen.
Footnote: Today has to be ‘Fish and Chip Friday’ – home cooked of course!
After the events of this morning there is no alternative but to put some serious issues on the table. Maureen’s scream followed spending time with her eldest son yesterday. His visits have often led to incidents of extreme distress, and confusion, about who is sharing Maureen’s bed.
Without going into detail Maureen’s previous marriage was a disaster. Ian’s presence often leads Maureen to think his dad is back on the scene again.
Unless we all take account of this association, and her fear of men, then we will continue to create further distress for Maureen. Therefore, anyone who drops Maureen off at a Day Centre where there are lots of men needs their head examining. Particularly, when they know Maureen’s history and her constant anxieties concerning men.
I will need to take advice how to handle this matter as sensitivities are involved. It is time for some serious talking about the best way to support Maureen. I am fed up with my best efforts being undermined by some family members, Certain people ‘don’t get dementia’: they continue to bombard Maureen with questions, and dump bad news during phone calls. We’d almost be better off if they didn’t know our number or where we lived: often Maureen’s reality. However as they do pussy-footing around on my behalf is not the answer.
It’s three in the morning and I am posting as part of my strategy to calm down. As I turned in bed half an hour ago, and opened a drawer on a bedside table, Maureen let out a deafening scream. When I mentioned ‘I was getting another antibiotic’ she said: ‘I didn’t know who it was’. The scream was so long, and loud, I am still emotionally shaken by the incident.
It is fortunate I am seeing two support staff in the next couple of days: Admiral Nurse tomorrow, and social worker the day after. They both need to understand how delicate Mauren is, and the fears that continue to haunt her. My understanding is that it is far too late to deal with events in Maureen’s life that have caused this ongoing fear that something dreadful is going to happen to her. One thing I know is I have no intention of mentioning the incident when she wakes this morning.
When these incidents have happened in the past I have struggled to get back to sleep. Perhaps in a strange sort of way it is a stark reminder to me to try to ensure that our new support staff are aware of the how delicate Maureen is. They would have no idea that beneath that confident persona is an extremely frightened child. I can fully understand how professional staff have taken in by Maureen when she is in good form and full flow.
I best switch this machine off and see if music and some basic household tasks help me calm down. It worked the last time. I can always catch up on sleep later in the day.
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!
Dementia: Sharing The Good Times 