Alzheimers fatigue or Memantine side effects.

[AliceA]

I too have been really concerned about sleepy OH in nightclothes 24/7 unless bullied out of them. The least venture out of the house, attempt to sweep leaves, walk round the garden etc send him back to bed and sleep for 2 hours. I witnessed the same with my dear friend, (now in end of life stage, )and my neighbour reports the same with his wife—(vascular dementia.)GP asked if I though OH was aneasthetised (??) but a 10 minute appointment every six weeks can’t assess the everyday reality so down to the judgement of the person closest. It’s difficult to watch an active adult sink into a waking coma. I don’t know the answer for you or me. Seems a dreadful consequence of brain shutting areas down. I think we can only do the best with what we know. I share your feelings and those of all contributors here. All we can do is our best—there’s nobody else to take over. Wishing good health and the energy to keep trying and stay cheerful. XxB

Hello @lauriets I have reservations about the quality of your experience because it doesn’t seem to be tailored to your wife but as you say a tick box experience. I think this is the default position of many areas of the country and best practice is like gold. My experience was that my husband saw the consultant 13 months ago who gave the tests and the diagnosis. I had three visits over three months from the mental health nurse who gave me a folder of leaflets and then he was discharged back into the care of the GP, because basically there is nothing else they have the resources to do. This is the normal situation in our area and if you want to see a consultant you can certainly ask, but only if it would be of any benefit. He has had two GP check ups, entirely on my initiative, but which were good because we saw an excellent young doctor who could not have been more candid. To be honest I am now the person responsible for planning and executing my husband’s care and this website is the best support for me. I think that the dementia trajectory has continued slow but sure in all areas of his functioning with or without donepezil, which he is now off. He is relatively happy, non aggressive and as long as he is in his familiar setting he is ok. I have posted on another thread about his sleeping more and more as time goes by. I would estimate that he is either on or in his bed dozing or asleep 75% of the time. He can only eat small easy to eat portions of food, as above but he is definitely eating less, his activities have declined because he has no desire to do them any more. I am following the U Tasmania Understanding Dementia course and realise that the palliative type of approach I am using is correct. Whatever keeps him stable and contented is the right course and I feel no need to be doing all the busy things that commonly get recommended. He looks at photographs and some of his old work magazines, I have recently taken him on a cruise with mixed results because bad anxiety is now a feature of his dementia, a common symptom as dementia worsens. Lots of support for your efforts to care for your wife and trust your instincts I think, nothing is a must because every one is different.

I back up the above, since the diagnosis and SALT team input on dysphagia, there has been no dedicated follow up. A new GP requested one but it was turned down as there was no need as the illness was progressive.
We see a GP for chest infections etc. Nothing else, we are left to our own knowledge and devices, I too found the course supportive and it has confirmed that what we are doing is all right. My husband sleeps a lot, has to be encouraged to get dressed etc. He does get anxious if we have an appointment and he is up and ready to go in the early hours, we or rather I just try and roll with it!
The concern is that my own health stands up, so good fortune and care for yourself.
Less can be more.

 

[Grahamstown]

etc. Nothing else, we are left to our own knowledge and device

This seems to be what has happened. David Cameron’s dementia initiative in his time has foundered for obvious reasons. The single thing that could make such a difference to carers would be state support for at least a period of time per week given by someone with training. As it is we are one person dementia care givers with no training to help us make sensible decisions. Today we have been around smelling the viburnum, difficult because he has lost his sense of smell but by burying his nose in the blossoms he got a whiff, listening to the birdsongs and getting a bit of welcome sunshine. He is exhausted and it’s back to lying in his reclining chair and I am pretty exhausted too because I have got the cough and it is bad. The course has depressed me a bit because it speaks to happy dementia sufferers and how much can be done to make their lives more meaningful, and I think at what cost to their nearest and dearest.

 

[AliceA]

Strange you mentioned loss of smell! Same here!
When we were in Sweden some years ago now, we heard a talk about the way the country was run at the Stockholm city hall. It was said with the voting system of PR progress was slower but steadier so no great swings of policy. There did seem a good care system for our friends as they aged.
Perhaps that is the problem, a fanfare of action then a swing away from action with government change.
Dementia is a world problem yet some simple reliable support would make all the difference.

Certainly we do seem like one man bands, we become experts because we have to whether it is a natural attribute or not.
I certainly get very tired having put effort into meaningful activities. We did part of the village quiz the other day. Long term memory cracked in but not as much as las time, I checked the answers on the iPad and this led to that reminded me of ........ some areas are noticeably vaguer now. Anyhow H. Seemed to enjoy it and he slept well after.
Walking is very slow, stopping and looking is fine but so tiring on my legs!
Have you recovered from the cruise, I find even enjoyable times wear us both out. Hope your cough clears soon Xxx

 

[Grahamstown]

My OH increasingly tired - but not on Memantine. I think it is just the progression of the disease

I think you are right because my husband is not on anything and is tired and resting most of the time. So many of the symptoms we worry about are the progress of the disease.

 

[Grahamstown]

Have you recovered from the cruise

Thanks for asking, I have felt rather unwell and I have been very tired over the weekend partly because of the poor quality of sleep on holiday and partly the wretched cough. It is beginning to get better today and the sunshine certainly helped. Our son popped in after work today to see how we are getting on which was very cheering. I am using the palliative care ideas now because they said that it’s a good idea to start thinking about it sooner rather than later and it seems to be working because I am no longer trying to stimulate him and trying to get him to be more active, so life is more tranquil. The trouble will come with other people’s suggestions because they can’t take in the reality of the disease and think it can be overcome.

 

[Starbright]

Hello @Grahamstown ..I do so agree with you re: other people’s perception of this dreadful illness. I’m really fed up with the ,” Oh you should get him out more, dementia cafe ,singing etc etc “, Whilst I understand it works for some and that’s fine ,but my oh will absolutely not go to any dementia related places or indeed do anything he doesn’t want to. If I try to persuade he gets very angry... sadly try as I may I’m just not good at the compassionate help fact sheet . Like you I am at the stage of no longer trying to stimulate him and we muddle through for a quieter life.
A x

 

[Grahamstown]

@Starbright Yes I am beginning to feel much more relaxed about what I should and shouldn’t do in caring for my husband. The other thing I have noticed is that all those videos of people in care homes or day centres with dementia, supposedly leading meaningful lives are actually mostly of the non dementia people making all the noise and dancing around, sometimes quite maniacally as if to show how everyone is having a good time. My husband would hate that too and that worries me about residential care unless it caters for people who want a quiet life. One care home I visited did have a calm atmosphere and they said that they didn’t push residents to do activities if they would rather be quiet in their room. Here at home that is his favourite ‘activity’, I think he lies and reflects on what he is able to.

 

[AliceA]

Yes, I do agree with you all on this. A gentle slippage into non activity does seem to suit. I intervene sometimes when I sense a sign like finger fidgets, to suggest a quiet activity. We have found a few walks on TV that has proved enjoyable.
I do encourage his small 'jobs' however slow or ill done they are. They provide movement and he glows in any appreciation.
The village quiz is a fundraiser, a copy was given as usual, it was picked up looked at and put back several times. Eventually I offered to help by doing it together. It did give a focus and talking point and it was interesting to see the deterioration. He admitted not to remember parts of his childhood that had been retained before.
I can cope with this if there are no exterior pressures.

This is where I think we need help, or at least I do. I am missing the physical exercise for my health, the pounds have crept on. My other health issues are compound by this but energy is needed elsewhere.
Doing the UD course was good and I have a few others I will sign up to for mental stimulation unfortunately this does not seem to burn calories.
I know about nutrition so I cannot cut back much more.

I feel the various methods, Montessori, Namaste and constant positive person centred approaches do help us weave through this maze. All have their place in the ever changing moments we are dealing with. Sometimes several approaches are needed in one day. All are palliative in the true meaning of being deeply caring.
Above all I think is retaining and nourishing our sense of humour, it gets me out of situations time and time again. A light touch.

I do share the horror of these places that have noisy involvement when the need is for a hand being held and someone to listen and soothe.
So Saradun, Starbright and Grahamstown, what a shame we cannot start our own community setting.

 

[Grahamstown]

We all have such a lot in common, not only with our partners but also in our own situation and approach. My fitness level has plumetted over the past few months even though I try to fit in a walk. @AliceA I have put on weight over the course of the year, holding it at too high a level now. With care I didn’t put on any more on holiday but I feel unfit. Funnily enough I felt quite thin on holiday because some of the other people were so huge, it’s all in perception. His walks are more of an amble now and like you @Starbright and @Sarahdun if I push him too hard it has a bad effect. I asked him if he would like to see anyone yesterday and he thought about it and then said it would be nice to see his sisters. One lives in South Africa and the other in England about three hours drive away. Then he said he would like to see his two golfing friends whom he does see but I think what he really meant was that he was remembering their golfing threesomes and harking back to how much he enjoyed it and how he used to do all the card keeping and lunch purchasing. So he had a brief glimpse of a past time which made him a bit unhappy so I don’t think there is much joy to be had from that approach. Here’s the thing though, he won’t remember any of it and that’s one blessing. I hope everyone has a calm and tranquil day, Sue
P.S. I only had one coughing fit last night and today is book club and my cleaner comes. It a half hour walk to the venue so hope I can make it, my first ‘time off’ for ages!

 

[jenniferjean]

I try to get my husband out for a short walk now and again. He finds it more difficult if it is at all windy, then he really does struggle. I've managed to get him to use a stick which at first he wouldn't use. Now he agrees it does help. Sometimes he asks to hold my hand which I feel is his wish for security, although he walks even slower then. He insists he is helping me. I feel that this slow walking is no exercise for me at all. I find it frustrating. But I can't leave him alone to go on my own. I'm supposed to have a two hour Take-a-break each week but because we've moved home I have to have another assessment from the care agency, which is proving difficult to arrange.

 

[Starbright]

@AliceA ...What a great idea, community setting .....

(((Hugs everyone hope you have a peaceful day))) A x

 

[AliceA]

We all have such a lot in common, not only with our partners but also in our own situation and approach. My fitness level has plumetted over the past few months even though I try to fit in a walk. @AliceA I have put on weight over the course of the year, holding it at too high a level now. With care I didn’t put on any more on holiday but I feel unfit. Funnily enough I felt quite thin on holiday because some of the other people were so huge, it’s all in perception. His walks are more of an amble now and like you @Starbright and @Sarahdun if I push him too hard it has a bad effect. I asked him if he would like to see anyone yesterday and he thought about it and then said it would be nice to see his sisters. One lives in South Africa and the other in England about three hours drive away. Then he said he would like to see his two golfing friends whom he does see but I think what he really meant was that he was remembering their golfing threesomes and harking back to how much he enjoyed it and how he used to do all the card keeping and lunch purchasing. So he had a brief glimpse of a past time which made him a bit unhappy so I don’t think there is much joy to be had from that approach. Here’s the thing though, he won’t remember any of it and that’s one blessing. I hope everyone has a calm and tranquil day, Sue
P.S. I only had one coughing fit last night and today is book club and my cleaner comes. It a half hour walk to the venue so hope I can make it, my first ‘time off’ for ages!

We all have such a lot in common, not only with our partners but also in our own situation and approach. My fitness level has plumetted over the past few months even though I try to fit in a walk. @AliceA I have put on weight over the course of the year, holding it at too high a level now. With care I didn’t put on any more on holiday but I feel unfit. Funnily enough I felt quite thin on holiday because some of the other people were so huge, it’s all in perception. His walks are more of an amble now and like you @Starbright and @Sarahdun if I push him too hard it has a bad effect. I asked him if he would like to see anyone yesterday and he thought about it and then said it would be nice to see his sisters. One lives in South Africa and the other in England about three hours drive away. Then he said he would like to see his two golfing friends whom he does see but I think what he really meant was that he was remembering their golfing threesomes and harking back to how much he enjoyed it and how he used to do all the card keeping and lunch purchasing. So he had a brief glimpse of a past time which made him a bit unhappy so I don’t think there is much joy to be had from that approach. Here’s the thing though, he won’t remember any of it and that’s one blessing. I hope everyone has a calm and tranquil day, Sue
P.S. I only had one coughing fit last night and today is book club and my cleaner comes. It a half hour walk to the venue so hope I can make it, my first ‘time off’ for ages!

Enjoy the book club, I managed to get a secondhand copy of the Norfolk Mystery, it was clean but had a staleness about it so I have put it in the freezer to see it that works!

 

[AliceA]

@AliceA ...What a great idea, community setting .....

(((Hugs everyone hope you have a peaceful day))) A x

You too, xxx

 

[AliceA]

I try to get my husband out for a short walk now and again. He finds it more difficult if it is at all windy, then he really does struggle. I've managed to get him to use a stick which at first he wouldn't use. Now he agrees it does help. Sometimes he asks to hold my hand which I feel is his wish for security, although he walks even slower then. He insists he is helping me. I feel that this slow walking is no exercise for me at all. I find it frustrating. But I can't leave him alone to go on my own. I'm supposed to have a two hour Take-a-break each week but because we've moved home I have to have another assessment from the care agency, which is proving difficult to arrange.

good luck with the agency, I find help is difficult to get in a rural area. We are however nearer family but they work long hours.
Mine is unable to be left either, tomorrow is the morning respite at a club so I treasure that like gold. I cannot leave the village but really enjoy the time not monitoring. Pity we are not nearer. X

 

[Grahamstown]

Enjoy the book club, I managed to get a secondhand copy of the Norfolk Mystery, it was clean but had a staleness about it so I have put it in the freezer to see it that works!

I do hope you enjoy it, it’s very idiosyncratic and probably a love it or hate it but it was a great holiday read. I set off for the book club and realised that I felt quite weak so got the bus. I had a coughing fit towards the end of the discussion about The Italian Teacher recovered with the others fetching water and it scored highly. I did manage to walk back but feel as weak as a kitten. My husband has been in bed most of the day and my cleaner looks after him. She has obviously cottoned on to his little ways and said she has to tell him 3/4 times to eat before he agrees. He doesn’t seem to know hunger much now. This shows you that carers have to get to know the person to manage properly.

 

[AliceA]

Yes, again, I find the same if I was not to offer and prepare food my husband would not eat, I have to remind him to drink too. He can prepare a drink when asked but forgets to drink or bring it in.
I feel, and this would not be possible for many, I have just immersed myself in the caring role.
Perhaps positive acceptance, it certainly means an easier life even if more tiring.
I am glad the book group went down well, I have a pile of unread books. Perhaps I will treat myself to a read tomorrow, the weather has been really dull here. X

 

[Starbright]

@AliceA ..Me too I have a big struggle trying to get him to drink water (( he has had numerous UTI and chest infections both of those at the moment)) . Have tried all of the usual cordials etc in a glass to no avail, but hey ho my 9 year old granddaughter gave him her old water bottle and he will drink water from it although not enough but more than he was drinking. I should say I’m a great believer in drinking lots of water and have always done so.
I’m sorry you weren’t so good today and hope you feeling better .Love the idea of putting the musty book in the freezer @Grahamstown must try it with some of the old children’s books (( mostly for the illustrations)) I have collected over the years.
It’s been a lovely sunny day here again but will a colder wind. A x

 

[lauriets]

Hi,Thanks for your reply,my wife is deteriorating quite slowly and has lost most or all of her short term memory but she is still the women I married (at the moment) She inherited the the Alzheimers from her mother but her mother never suffered from tiredness as my wife does. It is very difficult getting access to. expert advice ,the GP`s don`t seem to know too much.

 

[Grahamstown]

Hi,Thanks for your reply,my wife is deteriorating quite slowly and has lost most or all of her short term memory but she is still the women I married (at the moment) She inherited the the Alzheimers from her mother but her mother never suffered from tiredness as my wife does. It is very difficult getting access to. expert advice ,the GP`s don`t seem to know too much.

I hope the conversation on this thread has helped. When someone starts a new thread it does ring bells with other members and then the conversation develops in different directions sometimes, but it is often the only way we find out the complexity of any of the dementias. The GPs are generally poorly trained in dementia care and advice but some of the younger newer ones are. Quite by chance I was fortunate enough to get an appointment for a check up for my husband when I was at my wits end, with a young switched on doctor. He was so good and knew what he was talking about. That said, there was little he could do but confirm that all the traits were part of the disease, had no solution but keep on looking after him. I am sorry to say that what you describe is a good description of my husband, still recognisable but different. He is still in bed and spends up to 75% of his time there and is contented. I now take a palliative approach to his care which is never too soon to think about because it’s all about keeping your loved one comfortable, contented and pain free if appropriate. For example I only found out that his knee was painful when I moved it one day, he hadn’t said a word, so I found his knee guard and gave him his stick, which he doesn’t like using, plus some paracetamol. All helped him to walk more easily and now it has subsided.

 

[Grahamstown]

This is an extract from one of the topics on the UTAS Understanding Dementia course which I found very relevant.

What is a Palliative Approach?
Palliative care involves care that is targeted toward people who have been diagnosed with a life-limiting condition. Palliative care is often misunderstood as being of relevance to people with cancer only. People also commonly believe it is only focused on the very late, terminal stage of life-limiting conditions. However palliative care is not at all confined only to end of life; rather, it is appropriate at any age and at any stage in a serious illness such as dementia, and can be provided along with curative treatments for certain conditions.

Palliative care is an active and dynamic approach aimed at relieving symptoms and maximising people's function and quality of life. It uses a multi-disciplinary approach that can include input from physicians, pharmacists, nurses, chaplains, diversional therapists, volunteers, social workers, psychologists, and other health professionals - along with the person receiving care and their family - in formulating a plan of care designed to relieve suffering: in this case for those living with dementia and their family members.