Posts Tagged ‘Alzheimer’s disease’

death of a loved oneIn the last couple of weeks since my Dad passed away, I’ve found myself saying a number of times, “The last time I was here/did this, Dad was here”. Some of those memories have been ones I’ve smiled at other have been ones where I’ve shed a tear because even in these memories Dad’s illness was taking hold of him and turning him into a shell of the person he used to be.

These are the memories that will remain with me forever, and I’m sure in the coming days and weeks, many more memories of my Dad will come flooding back to me.

The Dad I knew and loved left us a few years ago as his vascular dementia took over his life. That however hasn’t made it any easier to cope with the death of Dad, as although he was not the Dad I knew, physically, it still looked like him, even right to the end.

Memories are all I have of my Dad now, but my love for him will live on, forever.

Take from our souls the strain and stress and let our ordered lives confess, the beauty of your peace

I could really do with some of that these last few days!

kneelAs many of you will know, my Dad passed away last Thursday morning after suffering from vascular dementia for a number of years. In many ways it’s  a relief that Dad has passed away as in these last few years, he’s had no life, and there was no chance of him ever getting better, only worse. Dad’s last few days were painful for us to watch, and he would never have wanted to live like this, so it’s probably for the best that he has passed away

My Dad professed no faith, but as my cousin said the other day, “He (my Dad) had many other qualities”. God has never wanted or expected us all to be good at the same things, so I believe that although Dad professed no faith, God’s qualities and talents were God-given.

It’s been a difficult time for Mum and me, so I’d like to take this opportunity to ask those of you who are praying people, to say a prayer for us tomorrow afternoon (Wednesday 27th February) as we say our final farewell to Dad. Many thanks for the love/support you have already shown my family during these difficult days, it has been very much appreciated by all of us.

Rest in peace Dad xxx

Why is it when you try to help some people you just get your head bitten off and they go all defensive about what they’re saying it what they are trying to do?

As you’ll be aware if you’ve been reading my blog for a while, my Dad suffers from dementia and so I’ve been doing my best to support and help my Mum as much as possible, particularly over the last 12 weeks or so while Dad was in hospital. I’ve been trying my best but much of the time it has felt like my best just isn’t good enough, as no matter how much I’ve tried to help and support my Mum, she’s made me feel at time like I’m not helping, or that I’m saying things that aren’t helpful, and so she gets annoyed me with.

I know Mum doesn’t mean it to come across like this, as I know she does appreciate my help and support, it’s simply that she’s finding it difficult to come to terms with the fact that Dad will never be home again, and after more than 55 years of marriage that must be so hard for Mum to cope with. So I guess it’s simply been that me saying things as they really are is hard for mum to hear as she’s still finding it difficult to accept how things are with dad these days.

No matter what people say or do sometime when you try to help them, don’t ever stop trying to help them, as often those in most need are those who “push” those trying to help them away.

Stay strong and continue to reach out to those in need.

I’ve said it before, but I make no apology for saying it again…dementia is a cruel illness.

As you’ll know if you’ve been following by blog posts for a wee while, my Dad suffers from vascular dementia and has been cared for at home by my Mum 24/7. However a few weeks ago we initiated the process with Social Work to get Dad into a nursing home full-time (you can read more about this in Time To Help…Please!).

Mum’s really been struggling to cope with caring for Dad full-time as he is now totally reliant on Mum to do everything for him…including the simple things we all do without thinking because they’re just straightforward basic tasks. For someone who has dementia, simple everyday tasks which we all normally do without thinking, become strange and alien to them. e.g. washing themself, dressing, feeding themself.

This last week my Dad would not eat or drink anything more than just a couple of mouthfuls of food or liquid, so on Wednesday Mum called in our GP, and he got Dad admitted to hospital as he was suffering from dehydration. While I’m sad my Dad’s ended up in hospital, it is the best place for him and for Mum, as it takes the pressure off Mum caring for him but also means he’s getting professional care. Having now had discussions with the doctor at the hospital and then with Dad’s social worker, it looks like Dad will now remain in hospital until there is free space for him at a local nursing home. That means Dad will now go straight into a nursing home from hospital…he will never be home again…

I’m fine about Dad going into a nursing home as he really needs the level of help they can offer him there, although when I think about the fact that Dad will probably never be home again I find that very upsetting. I try to remind myself though that while Dad is still alive, his body is still here, but the person who was my Dad really left a long time ago…

As far as Mum is concerned, she seems a bit more relaxed now as if a burden has been lifted from her. I know she still feels guilty about Dad going into care, however as hubby and me, Dad’s social worker and various others have said to her, it’s not that she’s failed Dad in any way, it’s simply that she’s done her best up to now caring for him, but he now needs more care than Mum is able to provide for him. When Dad was admitted to hospital on Wednesday Mum was fine about it as she realised it was what was best for Dad, and continued to be ok about it all until we went to visit Dad last night…

When we went into the ward to see Dad, he was lying on his bed slouched down with his head off his pillow, sleeping…he looked small and frail…and I think that was when it all hit Mum…she got quiet upset seeing Dad like that. Although he was actually a bit better last night than he’d been since he went into hospital as he actually answered us a few times when we spoke to him…not necessarily with comprehensible answers, but at least he answered us! Dad might have spoken to us tonight, but he didn’t know who Mum or I were, and no matter how long that has happened for I still find that sad and upsetting…though I can’t imagine how Mum must feel having been married to him for over 55 years!

Dementia is a cruel illness which robs the sufferer of their personality and leaves them almost like an empty body. I don’t think people really understand how dementia affects the sufferer and their family/friends until you’ve actually experienced it yourself…I hope you never will!

In conclusion, can I ask you to help me raise money for Alzheimer’s Scotland as they do a great job supporting and helping Alzheimer/dementia sufferers in Scotland.JustGiving - Sponsor me now!Thank you

Over 2 years ago my Dad was diagnosed with vascular dementia and so now, having seen first hand the devastating effect this illness has on both the sufferer, their carer(s) and their family and friends, I decided it was time to try and give something back to those who work with sufferers and carers in Scotland. So a few weeks ago I set up a JustGiving page to try and raise £500 for Alzheimer Scotland.JustGiving - Sponsor me now!

I’m obviously hoping you will support me by visiting my JustGiving page and giving a donation, but even if you’re not able to or don’t want to do so, I’d urge you to keep read this, as I want to give you some more information about dementia and alzheimers.

What Is Dementia?

Dementia is the progressive loss of the powers of the brain. There are many kinds of dementia but the most common is Alzheimer’s disease. Other kinds of dementia include vascular dementia, Lewy body dementia, frontotemporal dementias (including Pick’s disease) and alcohol-related dementias. It is also possible to have more than one type of dementia; for example Alzheimer’s disease and vascular dementia.

What all these diseases have in common is that they damage and kill brain cells, so that the brain cannot work as well as it should.

It is most common in older people but can affect people in their 40s or 50s or even younger.

What Causes Dementia?

At present there is no known cause of dementia. However medical researchers all over the world are working to find causes and develop treatments, and hopefully ultimately a cure.

How Does Dementia Affect People?

How dementia affects each person can vary as it very much depends on the which areas of their brain are most damaged by the disease.

I think the main symptoms which people tend to associate with dementia, is memory loss. Please remember though that everyone forgets things sometimes, and that as we get older we’re all more likely to forget things. When someone has dementia though, what is forgotten and the severity is very different, as they are likely to forget names of their family, not just of strangers. They may burn pans because they have forgotten about them, forget what they have eaten for lunch, or even if they’ve had any lunch. They may ask the same questions over and over again and again not remembering they’ve asked them before.

One of my worst experiences with Dad was the first time he asked me who I was because he didn’t know me. I went home in floods of tears that night and cried for days afterwards every time I thought about it. While I’ve got used to the fact that Dad no longer knows who I am, it still hurts, but most of all it’s sad that this is what he has been reduced to.

Another common symptom of dementia is losing awareness of which day it is or of the time of day. I know Dad never seems to understand whether it’s day or night, regardless of whether it’s light outside or completely dark!

Sufferers can also find themselves getting lost even when in a familiar place. They may fail to recognise people they have known for years and see on a regular basis. Confusion is a common symptom which in turn makes the suffer less able to problem solve or think things through logically. It can make dealing with financial matters difficult and can be dangerous as they are more likely to be taken in by fraudsters.

One of the worse symptoms as far as I’m concerned is, the way my Dad’s personality and his behaviour has changed. He’s much more aggressive and stubborn than he used to be and now often gets annoyed. These are also symptoms of dementia and as I say they are probably the most distressing for us, as it means Dad really isn’t Dad anymore…it’s like somebody else living in his body.

Over a period of time, it is normal for the dementia to affect most functions of the suffer’s brain. Eventually, most people with dementia will probably need help with every simple daily activities, such as dressing, eating and going to the toilet.

My Situation Now

Right from the time of Dad’s diagnosis, Mum has said she would care for Dad at home as long as she possibly could. I’ve witnessed Mum finding things more and more difficult as the months have gone by and Dad’s condition has worsened.

Dad’s now at the stage where he needs help with tasks which we all do without thinking each day, like eating, washing, dressing and going to the toilet. So much so that over the last few weeks, my Mum has made a hard decisions about my Dad’s future, one which I fully support, and that is that he now needs to live in care.

we’ve initiated the process with social work to get Dad into care, so hopefully in the coming weeks we’ll find a suitable place which is able to take him, as I really don’t think Mum can look after him at home any longer. It’s been decided Dad needs to go into a nursing home rather than a care home as he needs more intensive and specific care than can be offered at a care home, so as they say, the hunt is on!

Please pray for my Dad and my Mum in the coming weeks as we try to sort out Dad’s future in a home we are happy with.

Once again, if you are able to, please donate to my JustGiving fundraising page as I try to raise money, as well as awareness, for Alzheimer Scotland, who do a grand job of supporting dementia sufferers and carers all over Scotland.
JustGiving - Sponsor me now!

If you’ve been following my Tweets in the last week, you’ll be aware that I’ve been on holiday from work since Thursday of last week. The main reason I took the time off was because last Thursday my Dad, who suffers from vascular dementia was going into a local care home for a week’s respite care, to give my Mum a break – My Mum still cares for Dad 24/7 at home, and has been finding it increasingly difficult to cope.

So last Thursday afternoon, Mum and I took Dad to the care home. When we got there, we were waiting for Dad’s assigned carer to come and get us and take us to Dad’s room to get him settled in, when Dad burst out crying…it was heartbreaking to see, and Mum got a bit upset, but it was simply because Dad didn’t know where he was (despite us telling him lots of times) or why he was there (again, despite us having told him a number of times).

So we got Dad settled into his room, and Joan, his assigned carer said she’d take Dad along to the day room and get him a cup of tea and a biscuit, so Mum decided we should just go then, rather than stay and confuse Dad. As we were getting ready to go, Mum told Dad we’d be back to take him home in a week so he just had to stay here for a few days. Dad’s response to this was, “Thank goodness for that, as I don’t want to stay here!”. Probably not the best thing Mum could have heard before we left Dad, but then we have to remember that in 2 minutes time Dad will have forgotten what we’ve told him anyway. Having said that it didn’t stop Mum getting a wee bit upset again as we left Dad – It must be hard after being married for well over 50 years and now seeing Dad like this…

Anyway, onto cheerier things…over the last week while Dad was in the care home, I spent some time with Mum every day, either going for a meal and/or going to various shopping centres for a wander round the shops, as well as doing our usual weekly supermarket shopping. The first couple of days Mum still seemed quite tense and stressed, although after that I think she began to relax and seemed to enjoy her “free-time“, even although every day she did still tell me she missed Dad.

Before we knew it, the week was over and so yesterday (Thursday) it was time to go back to the care home and collect Dad and bring him home. When I got over to Mum and Dad’s to pick Mum up to head down to the care home, Mum seemed quite stressed and was quite nippy with me several times, although maybe that was because she was worried about Dad as the care home had phoned her this morning to say Dad had a urine infection. Mind you they’s told her there was a prescription ready for Dad at our health centre, and instead of just leaving it there so we could pick it up when we were on our way to the care home to collect Dad, Mum got a bus down to the health centre this morning and collected the prescription and then got the medication at the chemist! I was a wee bit annoyed at her for that as she has a sore back/hip and so walking to/from the bus/health centre would not have done her back/hip much good…particularly when we could easily have collected it on our way past the health centre to the care home!

When we got to the care home, Dad was sitting in the day room with several other folk, with some music playing in the background. The worst thing about it was Dad didn’t know who Mum was! He seemed to know he knew her, but she had to explain who she was…that was sad. We brought Dad home, and all the way home in the car and when we got back to their house, he kept telling us he had no idea where he was, where he was going or why…that was sad.

When we got back to Mum and Dad’s house Mum opened the door and went in, Dad just stood on the doorstep – Mum told him to come in, and he said he’d come in in a minute. Mum told him to come in again, and Dad got annoyed and shouted,”Alright I’ll come in then!” – Argument number 1 already.

It funny in a sad way, as Mum and Dad very rarely ever argued when I was growing up, and when they did it was usually over something I had done (or not done!). However these days, Dad does get quite annoyed and a bit verbally aggressive towards Mum at times, but although we know it’s simply one of the side-effects of his dementia, it’s still upsetting for Mum.

So Dad’s back home with Mum again. I just hope that this last week when Dad’s had his week’s respite care, that I have been able to help Mum relax and recharge, so she is able to care for Dad at home again. It’s been a tough week for Mum not having Dad with her, but knowing she needed a break and that he’s getting well looked after. It’s also been a tough week for me, as I am finding it hard trying to stay positive and strong for Mum (as well as for hubby with his illness), I’m not complaining just wanting to point out to you all that when someone in your family suffers from dementia, it not only affects their carer(s), but their whole family.

Mum tells me she prays for patience a lot, and I can understand why, as I too pray for patience daily. Although we both need patience in different ways, I am sure God can, and will, answer our prayers for patience.

I’d ask that if you are a praying kind of person, you pray for my Mum and Dad, and that Mum will find the patience and strength to provide the care dad needs, without detriment to her own health. Thank you.

One of the saddest things I ever heard was the very first time, probably just over a year ago, when my Dad asked me who I was.

For those of you who’ve been following my blog for a while, you’ll know that my Dad suffers from vascular dementia, and has over the space of the last couple of years got progressively worse.

It was heart wrenching the first few times when Dad asked who I was, and although it’s still very sad when he asks either me or Mum who I am, I am getting used to it as I know it’s simply part of this rotten disease that he’s suffering from and nothing else.

Well today is my Dad’s 85th birthday, a day where we should be rejoicing in the fact that he’s still with us. Unfortunately though it’s not such a happy occasion as Dad doesn’t remember it’s his birthday let alone what age he is. Despite Dad not knowing it’s his birthday, we did still get him a card and a present, as although he doesn’t know it’s his birthday, we do!  The sad thing is Dad didn’t understand why we were giving him anything or even what he was supposed to do with the card and present, so Mum ended up having to help him open both.

Dementia is a horrible illness, it’s indiscriminate in who it affects, but it’s affects are life changing not only for the sufferer but their family as well.

I pray that all affected directly by dementia receive the love and support they required to cope with this debilitating illness.

On Monday night this last week, there was a TV documentary entitled “Terri Pratchett: Choosing To Die”which followed Alzheimer’s sufferer Sir Terri Pratchett as he considered his options regarding prematurely ending his own life by committing assisted suicide. Sir Terry travelled to the Dignitas Clinic in Switzerland and witnessed first-hand the procedures for assisted death.

A tough topic, but one I felt I wanted to watch as it touched on a sensitive subject, especially as it followed Sir Terri an Alzheimer sufferer – an illness that’s as a family we are dealing with at this time.

It took me a while to decide whether I was strong enough emotionally to watch this programme, but finally, just before the programme started I decided I would watch it…and I’m glad I did.

Personally I do consider assisted death to be something that should be supported, however I can understand to some extent the reasons why some consider assisted death the best option for their future…and that I find very upsetting.

Those diagnosed with terminal or progressive illnesses have limited options on how they will see out the remainder of their life:

  • Family/friend look after then through their illness until death
  • Live in a hospice
  • Suicide
  • Assisted death (not legal in the UK at present)

One of the biggest issues the people featured on the TV programme felt about their future was the lack of quality of life they had/would have, and the burden they would be on their carer.

The thing is, is it really up to the person with the illness to decide that they don’t want to burden themselves on their carer? Is it not up to the carer to determine whether they want to and are able to care for their family member or friend.

On the other hand without actually being in the position of the person with the illness, would we ever really know what the person’s quality of life was – People can often look and act as if nothing is wrong, however they may simply be hiding their problems/their pain from those around them.

The other big thing that I noted in the documentary was that at the Dignitas clinic in Switzerland where they assisted with the deaths, they showed us a room full of case files. About one third/or a quarter of the case files were one colour and the remainder another – the majority of the case files were of people who had visited the clinic to ask to take up the option of assisted death however they had never done so…

On the programme they indicated that for many people who consider assisted death it was simply knowing they could go to Dignitas to end their life when they wanted, often meant the person never take it up. I’m not quite sure how I felt about this – on one hand there appeared to be lots of folk wanting the option to end their life, but the majority of them never went through with it…second thoughts perhaps!

For me, and for many I’ve spoken to, the toughest part of the programme was when we were told that the 42 year old (my age!) MS sufferer, had gone through with his assisted death…it just seemed such a waste of a life. For this case as with others who took up the assisted death option, I think it must be harder for those the people leave behind that for those who have chosen to die.

Even the last part of this programme when we witnessed a motor neuron sufferer go through with assisted death in one of the Dignitas rooms in Switzerland, I personally felt more for the man’s wife who sat beside her husband during his last moments and had to watch him drink the fatal liquid, than I did for the man ending his life. Is that wrong? Maybe it’s because it felt as though he was taking the “easy” option, while his wife was being left behind to deal with her grief and her loneliness without him – After all she had stated earlier in the programme that she didn’t wanted her husband to end his life, however she would support him in his decision – That really must have been very very tough for her.

At the end of the documentary Sir Terri Pratchett stated that he had found meeting both those who chose to end their life and someone who had decided to live out his life in a hospice, helpful, however he was no nearer deciding what he wanted for his future. The difficulty faced by Sir Terri is that as an Alzheimer sufferer he will need to choose earlier than those with other illnesses, whether he want to die prematurely, as otherwise the disease will prevent him from either understanding or having the ability to say the words that they want to die.

So did this programme change my view on assisted death? No it didn’t, although I must admit I did get a far greater understanding of why this option is chosen by some.

I feel we must continue to support people to live, not assist them to die. I hope you will join me in praying for all those who may be considering assisted death.

Due to some family circumstances, I’ve found myself thinking a lot about family members who openly say they do not believe in the existence of God, or have no opinion one way or the other about whether God exists or not.

It concerns me that there are so many people around me that I know, who don’t believe in God, nevermind the ones I don’t know!

However if I’m honest the ones I spend more time praying are actually the members of my family who are non-believers. Is that wrong?

There’s one member of my family in particular that has been in my thoughts recently, and that is my Dad – He’s a non-believer and as he’s now in the later stages of vascular dementia, it seems very unlikely to me now that he will find God before he passes away. Despite that I am trying to continue to pray that Dad will find God, as I believe nothing is impossible for God to achieve.

This has been a very difficult blog post to write, so I hope you will forgive me for the seriousness and morbidity of this post. It’s a subject which I know I am not alone in facing, and I hope that through reading this, if you are facing a similar situation, you might find comfort in knowing you are not alone.

Imagine a man who…

  • Graduated from university with a first class honours degree.
  • Worked for Rolls Royce.
  • Became a further education lecturer, teaching mathematics and science.
  • Served on his local council as a councillor for many years.
  • Played several musical instruments and was well known in the jazz and big band scene.
  • Composed and arranged music for bands/groups/ensembles/individuals.
  • Avid football fan.

Now imagine another man – This man…

  • Spends most of his time in bed.
  • When up, struggles to stay awake.
  • Is dizzy whenever he stands up.
  • Rarely goes out the house.
  • Doesn’t recognise people or places he knows well.
  • Struggles to remember what he’s been told just a few minutes earlier.
  • Has difficultly distinguishing between reality and fiction. i.e. He’s adamant about some things which we know are not real.
  • Has lost some of the ability to perform everyday tasks.
  • 

So who are these men I’ve described? Well both are the same man, and that man is my Dad!

The first man I described was my Dad prior to the onset of vascular dementia, while the second is a current description of him.

Dementia is one of those illnesses which I think unless you’re directly affected by it, will think it’s just a big word for someone who’s forgetful…if only!

Life has been drastically changed in the last year for both my Mum and my Dad, as my Dad’s dementia has quickly progressed to it’s current state. Mum now has help Dad with most things as well as explain the same things over and over again to him.

It’s sad to see someone you know and love deteriorating before your eyes, especially as there is nothing we can do to prevent it. However I think what makes it even harder for my Mum in particular, is the fact that my Dad was obviously a very clever guy, but this illness has now reduced him to someone who doesn’t even recognise family or friends anymore.

I find it hard when with Dad, so I can only imagine how Mum feels coping with him 24/7 – Mind you at least the doctor agreed a couple of weeks ago to try and get her some help, as personally I felt she was taking on too much as I can’t be there with her and Dad all the time.

Dad’s told Mum a number of times in the last few months that he’s not got long to go – Mum was understandably upset by this, as I was when she told me. However the doctor still tells us that other than his dementia, Dad is very well for his age, so maybe it’s just because Dad doesn’t really know what’s happening to him that he’s saying this.

Last Friday was the 25th March, and on Friday, Dad apparently asked Mum what date it was, and when she answered it was the 25th, Dad started wishing himself “Happy Birthday”…There was only one problem with this…Dad’s birthday is the 25th of April not the 25th of March! So very sad.

In closing I’d just like to ask you to pray for my Dad, and also for my Mum as she cares for him as dementia is more than just someone being a bit forgetful, it’s a debilatating illness that affects not only for the sufferer but also their family and friends.

In addition, please pray for all those around the world suffering from, or caring for someone with demenita, it’s a tough life, and one that everyone concerned needs our prayerful support for.