They are some relatively simple things that have been overlooked in the hurricane that strikes once the consequences of diagnosis hit home . Particularly when it is vascular dementia and you are discharged from the Memory Service and left to seek care in the community.
Then it gets worse when you are at the receiving end of poor treatment from social services. Our Care Plan has not been reviewed for over a year. No Carers’ assessment has been undertaken. Respite has been hard to come by in that time. Things have only started to move in a positive direction since I made a real fuss about our shoddy treatment. This has led to our social worker being replaced with a Dementai Specialist. I am now optimistic that we can put some of the dreadful events of the last year behind us and move forward.
It is easy when you are a Care Partner to sit back and blame others when the going gets rought. I only have myself to blame for the events of yesterday morning. Maureen joined me at the keyboard in the spare bedroom at 4.30 am absolutely terrified, as she had woken wondering if it was true that her daughter had died. Once again I had got up early: not surprising as we had gone to bed at 7.30pm the night before. Maureen had been tired and frightened and the only solution had been to join her in bed: knowing the consequence would be that I would be up early the next morning.
A couple of hours later confusion arose once again. Maureen didn’t know who I was as I took her a cup of tea in bed at 8.30 am: she said I looked different. In fact she then said if she’d known I was coming she would have sorted out some decent clothes so we could go out together.
It seems as if I am between a rock and a hard place in terms of supporting Maureen when she is tired. Perhaps the following check list might help:
- Set bed time lights out by 10 pm.
- Siestas in the lounge.
- Not getting up until it is light.
- Work in spare bedroom if Maureen stays in bed.
- Make our bedroom less utilitarian.
- Be patient as all changes will take time to have an impact.
Maureen has always enjoyed walking: in fact she loves being outside in the fresh air. Following stroke her G P advised her that: ‘she should keep walking’. She took his advice so seriously that she often uses his words as one of her mantras. Unfortunately, Maureen is so tired at the moment that she has only managed a couple of walks around the garden in the last few days. She has also had periods of abject confusion, with fear being an additional component of her presentation. I will have to monitor things very closely in the next day opr so and seek medical advice if things don’t improve soon. The cold weather isn’t helping and Maureen often wants to stay under the duvet.
If the cold weather remains a deterrent to taking exercise then we are in trouble. Recent research is suggesting that exercise can help the brain to regenerate:
‘Exercise may help reverse neurodegeneration in older adults, according to research published in the Journal of International Neuropsychological Society.
Carson Smith, PhD, an associate professor of kinesiology from the University of Maryland of Public Health and colleagues found that both healthy older adults and older adults with mild cognitive impairment (MCI) who improved their cardiorespiratory fitness through a moderate intensity exercise program increased the thickness of their brain’s cortex, the outer layer of the brain that typically atrophies with Alzheimer’s disease’.
“Exercise may help to reverse neurodegeneration and the trend of brain shrinkage that we see in those with MCI and Alzheimer’s,” said Dr. Smith. “Many people think it is too late to intervene with exercise once a person shows symptoms of memory loss, but our data suggest that exercise may have a benefit in this early stage of cognitive decline.”
If this cold spell continues it might be a goosd idea to consider seeking some Winter Sun. All this talking about renewing passports need to result in action. We don’t want to leave any stoned unturned as we use every possible strategy to maximise Maureen’s recovery from stroke.
Some postive news: I began work on reproducing dad’s notebook of the missons he flew on during the Second World War. I think I have found a format that will make our copies of his notebook look authentic. More work on this front is in hand and I am hoping to have some proofs to take to Coventry when I go down to see family on Saturday.
Maureen’s tiredness continues. We had a rest at 4pm yesterday afternoon and she has remained in bed for the last 15 hours. I have woken my exhausted wife a couple of times for drinks, to make sure she doesn’t get dehydrated.
It is likely that her sore throat and runny nose are taking their toll. This would also explain her increased levels of confusion. Her behaviour yesterday on my return from a physio appointment, and a shopping mission, was untypical. She mentioned that a lady had been in and given her some security advice, and that was why she had a collection of keys in her pocket. Unusually, no tidying up had taken place in my absence, and it looked as if she had been completely thrown by being left to her own devices.
I think I need to stay close by for the next few days and see if I can help her to shift this cold virus with some dietary supplements. Fortunately, I have a little something to keep me busy for the weekend: a small project that I have been procrastinating on for quite some time.
My dad was a ‘Tail End Charlie’ during the Second World War. Some time ago Jill, one of my sisters, lent me his RAF logbook and note book of raids he went on. I also have a number of photographs of dad when with his Lancaster Bomber Crew. I am going to make a booklet of his life in the RAF. This will mean we all have a memento of a very brave father: scanning and printing beckon. His log book and personal diary could then be offered to an RAF Museum
This small project might help me to stop thinking about dementia almost every waking moment. I need to find things to focus on that help me to become far more than a Care Partner. There couldn’t be a better starting point than ‘Jack’s Joint’: dad’s name was John but he was fondly known as Jack by members of his Crew.
Maureen slept for most of yesterday. I gathered early on, with her reluctance to get out of bed, that it could be another Duvet Days: one of those days following stroke that the brain is so tired that the owner has to rest. Maureen eventually surfaced around noon and had me in stitches with her performance in the garden.
Seeking some fresh air she decided to stroll around the garden in her PJ trousers and a cardigan. After a couple of circuits she suddenly burst out laughing with an anticipated comment from neighbours: ‘ I see she’s no better then.’
We had a late breakfast and an even later lunch. Maureen busied herself in between ‘packing to go home’. Fortunately, my rearrangements earlier in the day meant it was easier for her to pack, and much quicker for me to put things back. I have now put her prized possessions in boxes and trays: so now she gets them out and I can put them back. It is easier and quicker for both of us. All I have to do is keep to Maureen’s mantra of everything in its place and all will be well I hope!
The amount Maureen is sleeping at the moment I am beginning to wonder if she has a viral infection? She has been complaining of a sore mouth and throat for a few days. I am hoping that the amount of garlic I put in the evening snack will kill off anything nasty: it will certainly keep the vampires at bay!
Maureen tidied or packed once again during the evening. She felt hot after her exploits, and walked around the garden again under cover of darkness. Following her stroll I called up YouTube on the television in an effort to keep her awake, and we sang along to a number of our old favourites. I put our Songbird, Maeve on for a while and Maureen clearly enjoyed seeing her grandaughter hold forth. I wondered if that would spark an interest in a trip to Coventry to seek Maeve but unfortunately it didn’t.
At Maureen’s behest Chloe, our carer, is cancelled today but she has probably forgotten her concerns about ‘all these people in the house’ now. I fully expect her to ask if Chloe is coming today when she wakes this morning – she did yesterday. Perhaps, I’ve got to learn to listen and nod rather than act on Maureen’s impulses. I may well regret that I am a ‘lone wolf’ again today: you win some, you lose some.
Maureen had a really good day yesterday until she tired. She was up bright and early: so breakfast was over before Gail our carer arrived. We had been chatting about our care needs as we ate, and I left Maureen to carry on the conversation with Gail when she arrived.
Gail fully understood Maureen’s point that ‘she wanted her life back’. She explained very clearly that if others were doing the household tasks there would be little for her to do. As Gail said ‘it is your home and life and it’s all up to you’. Maureen was so careful to explain to Gail that it wasn’t anything personal, and she wanted to regain her independence. We explained that as our social worker was coming next week we would continue these discussions on Tuesday.
Once we had explained our thinking to Gail we let her go early so we could get on with our plans. This gave us time to pop into Cleethorpes so Maureen could choose some new spectacles. It didn’t take her very long to choose what was needed with a minimal support from me and an assistant.
After the opticians I headed in the direction of Maureen’s hairdressers. Once again Maureen confidently sorted out an appointment for next week when Mark would be back from holiday. Following calling in at a supermarket we made our way home for lunch.
Maureen busied herself tidying up in the bedroom while I prepared lunch. Following one of my Italian creations we decided to have a siesta. Unfortunately, the window cleaner interrupted our plans, and neither of us had the rest that we needed. This led to a period of confusion for Maureen as she thought it was time to visit a relative: something we had planned for Thursday. As she couldn’t find her handbag the trip was postponed until another day. It is interesting to note that until this point in the day Maureen’s presentation had been extremely good. Unfortunately, the missing handbag sent her into a loop about ‘things going missing’.
We had tea a little earlier than normal as Maureen said she was hungry. Following tea I made a mistake by leaving Maureen to tidy up the kitchen while I typed away upstairs. This led to a period of distress and confusion. I heard her crying that she wanted to go to bed but didn’t know how to secure the house. As I helped her with her night-time routine at 7pm she explained she wanted the bed to herself as she preferred to sleep alone.
I ventured into ‘Maureen’s bedroom’ about 6 am this morning. She had no recollection of asking me to sleep in the spare room so I went along with her thoughts that I had slept beside her. As always she has been thinking about a number of things as she lay there in bed. This has opened up a number of possibilities for activity today. With luck Maureen will send a couple of post cards to family and we might even venture to see her Aunty Ethel.
One thing for sure the window cleaner won’t interrupt out afternoon nap today. It will be interesting to see how Maureen copes if we have our siesta this afternoon.
Yesterday proved to be a difficult day. Maureen got up much earlier than normal, and struggled for most of the day. At times it was obvious she wasn’t sure who I was, and I was at a loss to know the best way to respond to her presentation.
She dozed for part of the morning and had another nap after lunch. When she woke she tried to get outside via the patio door and then wondered where her car had gone. Once she had seen that the car was still on the drive she retired to bed and closed the bedroom door .
I managed to have brief chat with Mel my Admiral Nurse during the afternoon. I needed advice about the stash of things that Maureen had packed to go home. My hunch about putting things back was supported and I duly unpacked. As our conversation was interrupted by Maureen waking Mel left me a message later in the day encouraging me to take more rest
I had also had an EMail from Sue our Social worker earlier in the day in response to some concerns. Sue’s response was very informative and supportive. She also advised me to take more rest.
When I read of colleagues experience on Talking Point, the Alzheimer’s Society Web Site, I realise that I am very fortunate with the level of support I receive as a Care Partner. Some poor souls have no access to an Admiral Nurse, and have very limited contact with social services. This is just another occasion when I count my blessings that we live in an area where the services are well set up to help Maureen and I as we continue on our journey.
Footnote: I intend to heed the advice of Mel and Sue to take more rest. Today I have managed to stay in bed beyong 8 am: something I need to replicate on a daily basis. I also think that one blog a day should suffice for any Care Partner: even me!
Maureen woke up early this morning and told me she had been dreaming about her Auntie Annie and Uncle Eric. Apparently, they were deaf and dumb, and Maureen has very fond memories of a very jovial couple. She reaclls when she first went to the High School in Nottingham that she used to walk to their house for lunch. As she recalled her memories of them and their children I listened and pushed the conversation in a certain direction.
I hope that I have shown my optimism for visiting old haunts in Nottingham. If my ‘cunning plan’ is successful it opens up all sorts of doors for further cognitive stimulation. Maureen is keem to learn more about why people are born deaf and dumb. She might also want to try her hand ay signing again. With a bit of luck I will see if I can get her to map out her journeys to school and her Aunty’s house. So lots of possibilities to cajole her to make another trip to Nottingham. She has forgotten that we were in her home city a couple of months ago but that doesn’t matter.
Nottingham is also a place that holds dear memories for me. I would like to spend some time in the area, and revisit a University I attended over 30 years ago. The last time we were that way I couldn’t even locate the building in which I attended lectures! The other advantage is that Coventry is only an hour or so away and if I could get Maureen that far it would be a real achievement.
EmmyLou Harris has something to say on this subject: Sweet Dreams
Footnote: All of this could be wishful thinking as Maureen seems really quiet this morning. She may well have forgotten her dream and my aspirations could turn out to be Pie in the Sky!
When I phoned our Heating Engineer yesterday morning he pointed out it was: ‘Car Crash Monday’. I realised I was lucky to catch Dave, as his phone never stops ringing with callers wanting the problems of the weekend resolved as soon as he switches his mobile on. True to his word, Craig, one of Dave’s engineers was here by nine and began his investigations into the problems with our boiler.
Maureen stayed in bed as Craig had to turn the heating off to begin his investigations. She was still in bed when Chloe, our carer arrived. They were holed up in our bedroom for a while chatting away like mother and daughter. As I typed in the next room I could hear then catching up on events over the weekend. Lots of further interesting events followed during the day indicate that Maureen’s recovery from stroke is continuing.
Around noon Maureen advised Chloe that she could go as she wanted to ‘sort out the remainder of the housework herself’. A short while afterwards she held court yet again on ‘carers coming into our house and disrupting our lives’. I listened and made supportive noises about it being difficult to know the amount of help we needed. Later in the day Maureen had been thinking about the support we needed and I found her thoughts very interesting, as my dad would say.
I had popped out for some shopping and been away for about an hour. Maureen had decided to have a rest rather than accompany me on my shopping mission. When I returned I fully expected to find her asleep but she was in the kitchen making a hot drink. She told me that she had been thinking while I was out. I couldn’t quite grasp the whole of her thoughts but it was something along the lines of we didn’t need to go anywhere else as the ‘ladies’ (as she often calls the carers) could stay with her here if I needed to go to work or visit family: so we didn’t need to go anywhere else.
I think it is possible that Maureen is asserting that she doesn’t need to go into care. Her reference to not needing to go anywhere else might well mean that she is o k where we are now. The positive in all of this is that I can pop out for the odd hour and she is quite comfortable to be left to her own devices. How I make sense of her packing to go home, in a big way, later in the evening is another matter. Quite simply, I can’t at the moment and I will just return all the precious items to where they normally go.
By the way we didn’t make the opticians. Maureen decided that choosing glasses was better left to another day. My second post of the day will attempt to recount a fascinating exchange that too place at 2.30 am this morning. I think my dad would describe that conversation as very, very interesting!
It’s taken two weeks but I’m confident there will be progress on Maureen choosing new glasses today. She had her eyes tested two weeks ago but was too tired to choose new frames for the stronger prescription. Her old glasses have now been missing for close to a month. I think the crossword did it yesterday and she is showing some interest in returning to Specsavers today.
I am hoping that I have removed some of the complexities of what Maureen needs to endure today: choosing anything is a major problem following stroke. So I have suggested that she just chooses any old frame to get her by, and returns for a spare pair when she feels so inclined. It could be another one of those occasions when the best laid plans doesn’t work out -time will tell.
The heating problem should be solved in the next hour or so. As I type the heating engineer has our boiler on test. It has been playing up lately and we want it sorted in case this cold snap becomes more severe. This has provided an opportunity to be around this morning, and chat with our carer rather than leave her to tend to Maureen while ‘I go out and have fun’ as Maureen puts it!. There are things that need to be reviewed in terms of carer support and I can start the process today.
So today starts the process of looking at things with a clearer focus for us all. With luck we might even stay warm while we move forward on our journey.
I can remember my dear father often using the title of this post. I would often chat with him and he would say : ‘very interesting’. I am sure it was a catch phrase from somewhere but I will always remember it as one of his sayings and gives me a lovely reminder of a great dad on this cold morning in Cleethorpes.
Yesterday was very interesting indeed! Maureen was up by 9 am and in good form for the whole morning. We had our breakfast together and commented on bird behaviour in the garden. The good news being that ‘Blackie’ is back – we think: a blackbird that responds to Maureen’s whistle. We can’t be sure it’s him, only time will tell when Maureen ventures out and tries to feed him grapes!
The morning went well with Maureen assisting her Chef with preparation of the Sunday Lunch. My new plan to be a bit tidier in the kitchen was appreciated by my humble assistant – possibly coach. As always we larked about -even danced- to music as we prepared lunch. Music while you cook is always on the menu here.
After lunch we had an afternoon nap with Maureen grabbing a couple of hours of shut-eye. On waking she was again keen to help with preparing our evening snack – ‘Lilly May Tea’: dedicated to her mother. Apparently, her mum always steamed crumpets, so I carry on with the family tradition.
Following tea we did a couple of crosswords together. One to be honest as we both struggeld with the clues of the second. Our routine is I read out the clues and we take it in turn to answer. Double points are awarded for silly answers – even more for suggestive ones! Maureen tired as we both ran out of enthusiasm and decided to ‘close her eyes’ for a while.
Around 9 pm I tried to encourage her to go to bed and failed. She said she was comfortable and it would be time to get up soon – obviously thinking it was morning. So I decided to go to bed and woke a couple of hours later to hear her pottering about in the kitchen. It took me quite some time to persuade her to join me in bed but eventually I succeeded.
In retropsect I think we had a fairly normal day for a couple of our age. It was cold outside, so we stayed in and had a restful Sunday. I think the balance of activity, stimulation and rest was about right. It will be interesting to see what others think of what the old folks got up to yesterday.
For the music lovers or ‘pop pickers’ I couldn’t resist this one: Lazy Sunday Afternoon