Do-not’s of Dementia
“Some of the things Alzheimer’s/ Dementia Caregivers shouldn’t do”
Caring for a person with Alzheimer’s is hard work. You may have to deal with personality changes and difficult behaviours. You may be asked the same question repeatedly over and over again.
You typically face problems with bathing, dressing and toileting. Your loved one may wander off if you aren’t attentive.
Eventually, you may have to grapple with the decision to place your loved one in a long-term care facility, and the list goes on and on.
But the most painful thing you will ever face as an Alzheimer’s caregiver is that you slowly lose the person you love to the illness.
If you read books, attend presentations and talk to experts about Alzheimer’s and Dementia caregiving you’ll get a seemingly unending string of advice. Some suggestions will be good others won’t be very sound. What I want to do is to offer some ideas about things Alzheimer’s and Dementia caregivers should never do.
v “Don’t Be in Denial”
When a loved one shows signs of dementia it’s painful to acknowledge it. It’s common for their friends and loved ones to be in denial. It’s easy to ignore the symptoms, make excuses for the person, push the symptoms to the back of your mind and find other ways to avoid thinking even for a minute that the person may have dementia.
The problem with denial is it doesn’t lead you to take your loved one to a primary care physician or neurologist for a complete check-up. And the problem with that is that sometimes dementia is caused by health issues other than Alzheimer’s.
“What If it’s Not Alzheimer’s?” some of those problems can be treated or even reversed. And if it is Alzheimer’s the earlier treatment is started, the better.
v “Don’t Ask “Do You Remember?”
Asking a person with Alzheimer’s if they remember something is a common mistake that’s easy to make. It’s almost as though we think we can jog their memory. But it doesn’t work like that. They have probably forgotten the event or events in question. That’s what people with Alzheimer’s or Dementia do, they forget.
So it’s better to say, “I remember when…” and then “Tell them” the story memory you’re referring to.
v “Don’t Argue With or Challenge the Person”
If you’re caring for someone with dementia, it’s so easy to contradict or argue with them when they say things that are total nonsense. And they characteristically say a lot of things that fall into this category. They may think they are a child again or they may tell you stories that couldn’t possibly be true.
But the fact of the matter is that you can never win an argument with people who have dementia. They will stick to their guns to the bitter end! It’s much better to agree with them and then change the subject. This can prevent a nasty argument that would spoil your time with your loved one. Tolerance is the byword
v “Don’t Delay Nursing Home Placement When It’s obviously Needed”
At some point in the disease process it may (but not always) become evident that you can no longer care for the person at home. Later in the development of the disease, it takes a village to care for Alzheimer’s or Dementia patients. They’ll likely need a nursing staff and aids for 24 hours a day and a doctor on call at all times.
They also need a dietician, a cook, a housekeeper, an activity director and many more professionals. Another important thing they need is to have people around them to provide social stimulation and support.
v “Don’t Stop When Your Loved One No Longer Recognize You”
Many people think that there’s no purpose to visit a loved one who no longer recognizes them, but I am firmly convinced that you should always visit.
First of all, the person may enjoy being visited even if he or she doesn’t quite know who is visiting them. More importantly, it’s possible that the person does recognize you but simply isn’t able to say so; this might sound strange but remember that the Alzheimer’s and Dementia mind works in strange ways.
We never know whom Alzheimer’s patients do or don’t not recognize us but I’m a great believer in that somewhere deep down they do still have some inner recognition but just can’t spesck out about it, although there’s no way to know for sure but my conviction is that the person is really “Still in there somewhere” so we should always assume that the person may know and feel more than he or she can actually express…
An Anxious Time July 2015
Well it’s only one day left until the close of Ramadan and then on Friday, Saturday, Sunday and Monday it’s the ‘Idul Fitri’ or (EID) celebrations to mark the end of the Holy Month of fasting.
It’s a time when people go visiting neighbours, friends and family to wish them a happy Eid and to say sorry if they have upset you during the past year but it’s also a time of great enjoyment and excitement for the children. “But for me” it’s a time of immense anxiety and panic when all of a sudden at about 8am people and children start to arrive at your house and at any given time during the course of the day we can have as many as 20-30 people in the house at one time and then the house becomes a cacophony of noise with people all trying to talk at the same time and noisy children excitedly waiting to receive their traditional Eid envelope gift which contains a small amount of cash inside, it’s at times like this when my head starts to reel from all the noise, panic sets in and I can feel the walls closing in around me, I become extremely agitated and lose my sense of equilibrium, yet I must still be present to greet all the guests at this just once a year special celebration.
Then during the course of the day Sumi and I will also go visiting neighbours and friends but Sumi now limits it for me to just those who live close by so that I don’t get to exhausted, also this year Sumi said as I’ve already started to become anxious and panicking she is going to give me a panic tablet on the Thursday evening so that by Friday morning I should be as calm as a mouse and ready for the rush of guests...
“Eid Mubarak 2015”
(Hari Raya Idul Fitri 1436
When the person with dementia has to be the caregiver!
I’m getting very concerned about my dear wife Sumi as she has had a migraine headache and some stomach nausea for about 3 weeks now and despite medication it’s not getting any better for her!
I know that she is also keeping a lot of (inner Family stress, and anxiety about my health in her mind) that is building up and causing tension in her neck muscles, and not only that as I’m only a mere mortal but I’m sure that she is also going through the menopause which our doctor agreed was most likely right and could be contributing to the problem, also what with it being Ramadan she is fasting so isn’t eating properly!
But the fact is its causing me a great deal of concern and anxiety as I just can’t seem to be able to do anything to help her alleviate the problem, so all I can do is to TRY and help her and be as understanding as much as I can.
Yet again the problem comes up for me as to what happens when our care giver becomes unwell and we (as the person with dementia) have to become the caregiver for our spouse!
“The loneliness and Utter Isolation within Dementia”
I know we all say the same thing in that “You’re never alone with this illness” which is true in respect of the number of people worldwide that have some type of dementia… ‘But’ it’s what I call the ‘Myself-Loneliness’ that can really drag me down to the pits of the earth and lose all my faith and fight for life…
Some day’s I will just sit on the terrace or sit motionless gazing out the window utterly lost in my own little world completely oblivious as to what’s going on around me as my mind has turned into a desolate wilderness of none-awareness, I sit gazing across the fields watching people working yet nothing is registering in my brain they just become hazy images… people can pass by me calling out ‘Hello Mr. Barry’ but again nothing registers in the brain their words just fall upon fallow ground… my dear wife Sumi might be speaking to me but she’s talking to an empty shell as I have no awareness of what she is saying… it gives you the feeling of almost like fading away from all your familiar surroundings with the vision of life before your eyes turning into a misty maze until you return to reality with a sudden jolt, other times I feel as though I’m standing on the edge of a precipice that’s trying to pull me in and any will to fight back against it to pull you back from the brink has gone, it’s got nothing to do with daydreaming, depression or anxiety, it’s just the utter loneliness and isolation of the illness at that moment in time that you can experience within the illness which is extremely difficult to explain to people.
Some days I sit at the computer with all good intentions of typing but the words just won’t come into my brain so I sit gazing at the monitor lost in my own little world of non-awareness as to what’s happening, Sumi might say to me (What are you doing, or typing) and I normally reply “I haven’t got a clue”
Some might say “You must fight against it” but how can you fight against something when you’re oblivious to it happening… or that is until you’re told about it… and it’s something that can become more frequent as the illness progresses… yet even though you try to prepare yourself mentally for when it happens again there is nothing you can do to prevent it from occurring… we are all fighting against an invisible foe that yields no remorse within the illness or the: “Myself-Loneliness and Isolation”
“Copied from my hand written notes Started on Saturday 30 May”
After my computer went down last month (May) I kept hand written notes which I have now type up!
Took my computer for repair as it needed a new (Hard-drive) they said it would take about a week but actually took two weeks but fortunately not as expensive as I thought it would be!
Then I went for my monthly check-up, the doctor had a quiet word with Sumi and said that my condition has declined far more sine my previous visit, so has my Parkinson’s and the agitation so the doctor has increased my medications.
Fortunately my diabetes blood sugar is on ‘Par’ but my latest health issue is an area of concern as the swelling in my left leg, hip, groin, and the very delicate area of the male anatomy has been getting worse so the doctor has changed my blood circulation tablets and has also referred me to see a (Bone specialist) ‘Orthopaedist’ as she thinks it might be a “Lymph gland node” causing the problem or maybe coming from my osteoarthritis in my spine and hips, I don’t know, all I do now is that it’s getting very uncomfortable so all I can do is to lay flat on my back with my leg raised up which helps lessen the swelling well that is until 8i start moving around again! Now all we can do is to wait and see what the Orthopaedist says next Monday evening!
One thing I did make clear t my doctor was that any type of operation is out of the question as the anaesthetics would only cause my dementia to decline far more rapidly so I will have to depend on medications, anyway there’s no way Sumi and I could afford such an operation out here as it would be far, far too expensive for me and out of our monthly budget! You might say (don’t you have medical insurance) and the answer to that is “NO” as health insurance was only introduced out here about 8 years ago but if you have any type of dementia or are over the age of 65 then the insurance companies won’t insure you, but at least I do have health insurance for Sumi and our granddaughter but unfortunately that doesn’t help with my health issues.
To be very honest I feel as though I have now slipped into the abyss and not having the computer and the added health issues is just making me feel even worse and far more depressed so I’m at a very low point in life, I feel very physically weak and lethargic and even more confused than ever before since my diagnoses!
Those of us with any type of dementia strive to fight back at the illness day after day to try and retain some sort of quality in life “But” when other health issues invade your daily life the daily fight turns into a constant mêlée, we know we can’t win “YEY” we must fight on, and despite all that is happening in my life I would say my dear wife Sumi who I can see from the tears filling her doe brown eyes is far more anxious and distressed then myself about my condition and at a loss of knowing what to do for the best to help me, and I am at a loss of knowing how to best help Sumi! And if I look back over the past ten and a half years before my diagnoses then life was good for us and we were steaming down the fast highway of life with our thriving bakery and café business but once my diagnoses of dementia came on the scene our life has been turned upside down and into a daily battle of dragons and dungeon’s, this illness is a catch 22 situation without any absolution or turning back…
Sunday 30 May:
I know it’s only Sunday but I’m already starting to panic about going to see the (orthopaedist) on Monday evening as it’s like waiting to enter into an unknown zone and I’m filled with apprehension!
Monday 1st June:
I woke up not feeling good as from the moment I opened my eyes I realised today was the day I had to see the orthopaedist specialist!
The (orthopaedist) doctor’s clinic phoned and told us that my appointment had been changed to 3pm which was some good news! The doctor first wanted to know all my medical history since my diagnoses; he then gave me a check-up of my legs, hips and spine and confirmed that I have osteoarthritis but that wasn’t causing the swelling in my leg and groin! But he did say that the left “Lymph Node” was very swollen and that my ‘private area’ was very inflamed and swollen! So he gave me a cause of medication for the (Lymph Node) and referred me to a (Urologist) for immediate further attention! To be hones when we left his clinic after all the bending and twisting of my limbs I felt very uncomfortable and as though I’d be examined by a contortionist!
Once at the hospital we again had to explain to the (Urologist specialist) about all my health issues since my diagnoses, then he examined the swollen areas and did an ultrasound and said that my prostrate was swollen, I explained to him that I’d had an ultrasound just a few weeks ago but he said it wasn’t done appropriately as he could clearly see that the prostrate was badly swollen which he said was also causing the swelling in my (private area) my immediate thought was (I hope it’s not cancer) ‘But’ he assured me it wasn’t, I hope he’s right! Anyway I was again given a course of yet more medications.
With all that over Sumi and I finally got back home about 10pm and feeling very exhausted, now it’s just a matter of hopping that all the very, very expensive medications and doctors’ fees work OK!
One thing I do is that all the extra medications have made me feel extremely drugged up and very drowsy!
“Deterioration and Fears”
Since the beginning of this year 2015 until now “June 2015” my condition has gone rapidly downhill and with the now New health issues of which despite all the added medications I’m not getting very much reprieve so to be very honest I am starting to get very scared and at a loss of knowing what to do next!
At night times I lay on the bed and my mind seems to go haywire in “fear” of my future, I try to cast the weird thoughts out of my mind by trying to recall past happier days but the constant ‘fear’ and my deteriorating condition cast any happier thoughts to the wayside like fallen Autumn leaves!
But I’m not just concerned about my own health; I am also very concerned about my dear wife Sumi who has to shoulder the daily burden of taking care of me all by herself, as I’ve said many times before we have no Alzheimer’s society support or no support phone lines, neither do we have any social benefits or any social security financial support, there’s nobody that could come and sit with me to give Sumi a little bit of (Time out) and there’s no respite time for me the only respite I can get is in my own bedroom!
All this weighs heavily on my mind which I guess doesn’t help my condition it just adds to my growing “Fears” and at times I feel so weak and fatigued I feel as though I am going to pass-out so I have to lay down on the bed until the feeling passes. “BUT” what I find the worst thing to cope with is the constant feeling you can get of still being aware of your own deterioration which I find makes my dementia feel even worse and extremely soul destroying! YET fight on we must!
My physical condition is rapidly deteriorating
My physical health has gone downhill again and my left leg is all swollen again but now it’s also gone into the private delicate parts of the body making my testicles and foreskin all swell up with fluid (Very uncomfortable) I do have some medication from the emergency doctor but it doesn’t seem to be helping, Sumi thinks that it might be some sort of medication reaction!
And YES just last Thursday I had blood tests and Ultrasound on all my organs and they found nothing amiss! Only thing that came out of the blood test was that my Triglycerides are a little bit high otherwise all was normal, the doctor that did my ultrasound said that maybe I need to have some x-rays done of my spine and hips as the osteoarthritis is causing pain in my back that then goes down my leg, this mixed dementia has no remorse…
“Fighting back whilst Baking”
When I first woke up this morning at 4-30am I felt in an utter daze and somewhat lost to the world around me as my mind was in a mist! Then when Sumi and I went for our walk it was as though I were dragging my legs and body along with me as the discomfort from the osteoarthritis in my spine and hips was sending shape pains down my left leg and into my hips and I kept losing my balance, Sumi said that with every step I took I was huffing and puffing as if exhausted and my face was winced with the pain. I turned to Sumi and said this is extremely hard work this morning I don’t think that I can stand and do any baking! But once we got back home I changed my mind (which is not unusual for a person who has any type of dementia) as determination got the better of me and I don’t like to be defeated or give in to an unwanted illness!
So with a lot of effort and not forgetting the confusion I set to and prepared all my ingredients and set about the days fighting back…
(Today I made)
100% Whole-wheat Bloomer loafs with white and black sesame seeds and poppy seeds,
English sultana Scone rounds,
Toad in the hole, but with sliced sausages and tomatoes,
Must say that despite all the discomfort in my back and leg and the confusion in my brain I was well pleased with the results which helps with motivation and brain stimulation…
Continuing my baking has become my mother of intent in fighting my Alzheimer’s
Concerning Health issues and a Birthday
Well I went for my check up the on Monday which wasn’t too bad “But” the doctor is concerned about the swelling in my left leg and foot which is now starting to get very uncomfortable! I have been taking medication for it but it’s not really been helping, so the doctor checked me over and all around my groin area and it could be that I have a Lymph Gland problem in the groin that’s restricting the blood flow into my left leg, the right leg is OK although it just aches.
The doctor wants me to ‘Maybe’ have a blood flow test but they can’t do it here in our town hospital so I would have to go to the city of Surabaya which is a 4-5 hour drive away from us which to be very honest is out of the question for me so as the next step the doctor has changed my medication but it still doesn’t seem to be helping in fact its causing me some adverse reactions! As in making my foreskin full of fluid which really frightened me this morning so Sumi called out the emergency doctor who said not to worry and gave me some water reducing tablets for it. But it’s my left leg that concerns me so my own doctor said that step two is for me to have an ultrasound around the area of my groin to see if there is any swelling of the Lymph glands
So not such good news and to top it off today is our granddaughter Fira birthday and should be coming to see us after school this morning “BUT” now Sumi has got herself all upset about the situation in the house again and her daughter and Fira, to be very honest I find it very hard to be patient when this situation raises its ugly head again and again and with my worsening condition and other health issues it makes it even more difficult for me!
“Granddaughter Birthday and Afterthought”
It’s just occurred to me and I did tell the doctor who came to check me this morning “But” yesterday I stood for 6 hours making and decorating our granddaughters birthday cake which I must admit I found very demanding for me, in the past I could do things like this in an hour or so but when you have any type of dementia things can take considerably longer yet can still be very rewarding to the spirit, but all that extra pressure on my leg, the arthritis in my knee and the osteoarthritis in my spine and hips just helped to aggravate the problem of my leg swelling up and the Lymph gland problem, but no matter what I was very pleased that I managed to make the cake despite it being extremely demanding on my illness, and to see our granddaughters enjoyment and excitement made it all worthwhile…
We cannot just acquiesce to the dementia we must fight against it as hard and for as long as we can…
Two of our nieces that live right next door to us had their birthdays on 30th and 31st on March si they had asked for a birthday cake with lots of chocolate on it so thats just what I made them, But the fact it is took me all day just to make this simple cake and my hands would not stop shaking as I was doing it, such is the effect of my dementia condition after 10 years, YET we must still keep fighting on and try not to let the dementia totally control us.
The reason being is that:
By profession I had been a Master Baker and Confectioner specializing in the decoration of celebration cakes, when I first started my career at the age of 15 in a small family run business called (Painters of Enfield). Little did I realize how my career and life would evolve, as it gave me the tremendous honour of being able to make cakes for many members of royalty, stage/screen celebrities and to be used in television advertising? Then, when I was working as a regional bakery adviser for one of the UK's leading supermarket chains, I noticed a challenging job opportunity in a bakery trade magazine to work overseas in Doha, Qatar, as a bakery manager within a department store. I applied for the vacancy and out of 300 applicants was fortunate to get the position. It was to be a major stepping stone that would challenge my whole life in so many ways.
Then in January 2005, fate took a devastating twist in my life when I was diagnosed as having mixed dementia with Alzheimer's and Parkinson's disease which turned my entire life upside down and I was forced to take early retirement.
“BUT” I have always been a fighter and I passionately loved my past profession and especially the cake decorating so ever since my diagnoses I have continued to make and bake all my own products and even managed to publish two recipe books.
The fact is that I still find baking and decorating (although now very demanding for me) an immense means of motivation and therapeutic thus giving me the will to fight against my illness also I just keep repeating to myself:
Continuing my baking has become my mother of intent in fighting my Alzheimer’s