Posts Tagged ‘vascular dementia’

Aunt Mae (Aug 2011)Today, the 23rd October, is another sad day for us, as today would have been my Aunt Mae’s 91st birthday.

It’s now just over 6 months since my Aunt Mae passed away, but just typing these words have started my tears flowing again. In many ways it seems like just yesterday Aunt Mae passed away, just 6 weeks after my Dad died. However in many other ways it seems like an eternity since both Aunt Mae and Dad were here with us.

I have thought of my Aunt Mae every day since she died.

I have shed many tears every day since Aunt Mae died.

I have missed my Aunt Mae every day since she died.

As Aunt Mae’s dementia worsened, she, just like my Dad, failed to recognised us or acknowledge that she knew us and latterly her personality completely changed, as she went from being a loving caring person to someone who was angry and aggressive…that just wasn’t my Aunt Mae. Having said that, during her final few days in the hospital, she did seem to have a the odd moment of clarity, as at one point when Mum apparently told her I was on my way in to see her she smiled and tried to say my name…

I am in no way saying there was no bond between Aunt Mae and the rest of my family, but I know there was always a special place in her heart for me, after all I was named after her as Mum and Dad gave me her name as my middle name, Mary.

These have been incredibly difficult months for my family, and my Mum in particular – Mum’s struggled to come to terms with the death of first my Dad and then Aunt Mae, but she’s getting there, as am I. I would however ask that today, as we remember my Aunt Mae in particular, on what would have been her birthday, that you continue to pray for us as we continue to grieve the death of two much-loved members of our family, my Aunt Mae and my Dad.

I love you Aunt Mae, and I miss you so much. You’ll always be in my thoughts and firmly in my heart. Dorothy xxx

Today, the 25th April is another sad day for us, as today would have been my Dad’s 86th birthday.

Dad at our weddingIt’s now just over 2 months since my Dad passed away, but just typing these words have started my tears flowing again. It really doesn’t seem like 2 months since Dad died, mind you a lot of that has to do with the fact in that interim time as many of you know, my Mum’s older sister, my Aunt Mae, also passed away. My Aunt Mae’s funeral was just over 2 weeks ago, so I’ve found that since then, I’ve finally been able to grieve for my Dad, as up until then I never really got a chance to grieve because my Aunt Mae was so ill.

Don’t get me wrong, I do not mean I am not grieving for my Aunt Mae as well as my Dad, as I most definitely am, but as you can probably understand, I am really missing my Dad.

I have thought of my Dad every day since he died.

I have shed many tears every day since Dad died.

I have missed my Dad every day since he died.

Yes, Dad’s illness in his final few years meant he was never really the Dad I knew and loved during, but even in those days when his vascular dementia meant he rarely knew us, or had any kind of conversation with us, there was still the odd time when he’d look at me and say, “Hello my lovely young lady” – something he often called me for many years. The days he said that to me became fewer and further apart, but when he did day them, they always brought tears to my eyes…and they most certainly have again tonight as I typed this post. The sad thing is no sooner would he uttered those words than he would become that vacant vessel again which didn’t understand what was going on around him, who was with him or indeed understand that he knew us.

These have been incredibly difficult months for my family, and my Mum in particular – Mum’s struggling to come to terms with the death of my Dad and Aunt Mae over these last couple of months. Therefore I’d ask today, as we remember my Dad on what would have been his birthday, that you continue to pray for us as we continue to grieve the death of two much-loved members of our family.

I love you Dad, and I miss you so much. You’ll always be in my thoughts and firmly in my heart. Dorothy 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.

Ten weeks ago today I was at work when I got a phone call from my Mum to tell me Dad was being taken into hospital because he was dehydrated, as he was refusing to eat or drink very much. Ten weeks on and Dad’s still in hospital.

Dad’s been in I think, 5 different wards over that period, albeit the last two have been because he climbed out of bed a couple of weeks after he went into hospital, fell, hit his head and gave himself a cracker of a black eye, as well as fracturing his hip! This resulted in him having to be moved to another ward as he had to have an operation to fix his broken hip. He’s now in the hip fracture rehabilitation ward where he’s doing ok as far as his hip is concerned.

Initially when Dad went into hospital we were over there every day visiting him, which was very hard work for me with working full-time and then going straight from there to the hospital and not getting home until 8 or 9pm at night. Fortunately after a few weeks of this Mum realised this was too much for both of us, so we now just visit Dad every couple of days.

I know Mum wishes she could visit Dad every day, but to be honest, due to Dad’s dementia, he has no concept of how frequently or infrequently we visit, and in fact during many of our visits, refuses to speak to us or even open his eyes, as he’s happy to sleep all the time. Mum misses Dad greatly, which is only natural after more than 55 years of marriage, however Mum was no longer coping with Dad at home and we had already started proceedings to get Dad into a nursing home full-time, so Dad not being at home anymore, was always going to happen soon anyway, it’s just hospital he’s ended up in initially.

Even although it’s my Dad we’re visiting, I’m sorry to say I find it quite a chore. Don’t think it’s because I don;t love my Dad because I do, but as far as I’m concerned my Dad “died” a few years ago when his dementia meant he didn’t know me any more and he could no longer have a sensible conversation with us. Much of the time when we visit Dad he just sleeps, or sit/lies with his eyes shut unwilling to talk  or look at us. Mum is still making comments to Dad as if he’s going to get better and as if he can logically understand where he is and why. It’s sad but also frustrating.

I’m physically and emotionally shattered most of the time these days as it’s hard work working full-time and then spending time visiting someone in hospital and just sitting there for an hour or more without being able to have a conversation with them.

I feel really guilty for feeling like this, after all, it is my Dad I’m talking about, but sadly Dad isn’t going to get any better, so it’s only going to get harder.

Hopefully Dad will not be in hospital too much longer. Although he will never be home again, as he will only be discharged from hospital when he’s able to go straight into the nursing home which is just a few minutes away from Mum. At least when this happens, Mum will be able to go visit Dad whenever she wants and as frequently as she wants, without necessarily needing me to give her a lift.

So 10 weeks and counting…it’s been a long 10 weeks, but at least we know Dad’s in good hands and getting the best possible medical care.

I’ve been feeling really guilty about my feelings towards Dad, particularly when I go to visit him in the hospital.

Why? Because I find it incredibly difficult and if I’m truthful, boring. Dad is always so tired so just wants to sleep and even on the odd occasion when he is awake, we are unable to have any kind of conversation with him as most of what he says these days makes little sense.

I find it quite a chore to visit Dad as most of the time I’m just sitting there with him he dozes or sleeps, and has been known on a number of occasions to pull the sheets or pillows up over his head as if to tell us he’s not interested in talking to us. Even when I visit Dad when Mum’s with me, it’s still hard work, as Mum seems happy just to sit and look at Dad when he’s sleeping, and just hold his hand.

I now almost look forward to the odd day when I don’t go and see Dad as I do find it quite a chore to go and see him, and, I’m sorry to say, I often feel it’s a waste of time visiting

I know it’s my Dad, but to me my Dad “died” a long time ago and it’s just his body that’s still here. I often laugh at some of the things Dad says and does these days which I often think must seem really insensitive to others, but I know that’s just my way of coping with how Dad is these days. Although it seems to be my way of coping with current circumstances, I do feel incredibly guilty for feeling this way, because however you look at it, he’s still my Dad, and I still love Him, and always will!

Dementia is such a cruel illness, and affects not just the sufferer but their family and friends too. So today, I’d ask that you share a prayer for all those living with dementia, either because they suffer from it themselves, or they have a family member who is living with dementia.

I was chatting with a friend recently about how when you look back at some situations/circumstances you’ve been through in life, you now wonder, “How on earth did I get through that?“.

We all have times in our lives which challenge us to our limit, and which we find incredibly difficult to cope with at the time, but somehow or other, we do!

For some, these kind of situations arise when they have to deal with the death of a close family member or friend, or when they or a loved one suffers a serious illness.

I’ve had a couple of times in my life, that now I look back on them, I wonder how on earth I got through them. The most recent of these events I’ve talked about a few times in my blog, and that was when I became very ill a few years ago. The other occasion was a number of years ago, in fact 2 months after I got engaged, when my dad took seriously ill. To cut a long story short, hubby and I got engaged in the December and were due to get married the following August, but in the February my Dad took seriously ill. For a while it was touch and go whether he would survive and even if he did, whether he would be able to walk me down the aisle…

I was always a Daddy’s girl when I was growing up, and always into football, tennis and music, just as my Dad was. I think it was this that made it harder for me to comprehend what it would be possibly get married and my Dad not being there…those where very very difficult weeks and months.

As you’ll have gathered if you’ve been reading my blog for a while, my Dad did survive, and he was able to walk me down the aisle when I got married. Yes, Dad was quite slow at the walking and his Father’s speak was very short but I was just so happy he was able to share my wedding day with me after the uncertainty of whether he’d survive.

Looking back at those times when Dad was seriously ill and also more recently when I was very ill for a number of years, I have no idea how I got through those times. When I was ill I was in severe pain constantly yet I managed to keep working, although I do remember I spent a lot of time in the ladies toilets trying to keep myself in one piece and cope with my pain. As I consider my pain levels these days and how difficult I find things now, I find it incredible that I was able to carry on working during that time,as my pain levels now are a fraction of what they used to be and I know how difficult I find life now!

So how did I manage to get through those times?

During those times, particularly my own illness, I didn’t feel at the time that I was “getting through it”, and I certainly felt as if I was totally alone. However in hindsight, I now realise that at no time during either of those occasions or indeed any other time in my life, have I ever been on my own, because God as been firmly by my side, holding my hand and guiding my though those difficult times.

In fact these last few months when things have once again been very difficult due to hubby’s health problems, Dad’s dementia, supporting Mum and my own on-going health issues, I have kept reminding myself that God is with me during all of this, and He is there supporting me, even though at times it may not seem as if he is.

So how did I manage to get through my difficult times? I got through them with God’s help.

So no matter what you’re facing in life, do not think you’re ever on your own, because through it all, God will be with you.

I’ve been finding things quite difficult in the last while, supporting Mum as she cared for Dad at home, and supporting hubby. It’s felt at times as if no-one has been there to support me as I continue to struggle both physically and emotionally.

As you’ll know if you read my blog post yesterday (Even The Simple Things Are Forgotten) my Dad was taken into hospital on Wednesday suffering from dehydration as he wouldn’t eat or drink anything. Having spent hours in the hospital on Wednesday with Dad waiting for him to be admitted and then transferred to a ward, I was physically exhausted and due to the stress and supporting Mum, emotionally exhausted too. Since then we’ve visited Dad each day in hospital and that in itself is tough as he is just lying in bed with his eyes shut unable or unwilling to do more than respond occasionally to things we say to him…he looks so frail and helpless.

The other week I was chatting to a friend and we were talking about all the things that are going on in my life at present, and they asked me how I able to keep going. My honest answer to that question was, “not very easily“! Yes, while I’m in public I do my best to be strong and look completely in control, but underneath I’m struggling to keep it together and be strong for everyone around me. It would be a little easier if I was at least feeling pain-free all the time, but having to deal with all the things going on with various members of my family, and support them, as well as coping with severe pain levels at times is incredibly tough.

As far as how I cope with the situation with Dad, I think my automatic coping mechanism of seeing the funny side of everything definitely kicks in. Dad’s dementia means he has often said and done things which are quite funny on one hand, but when I think about the person he used to be, are incredibly sad and heartbreaking. Whenever anyone asks about Dad I find myself almost smiling and joking about it all the time, simply because it’s how I keep myself together and don’t fall apart. So if you’ve spoken to me and thought I seemed to make light of Dad’s situation please realise it’s just the way I cope with it, as I am deeply upset and saddened by what has happened to him, and I certainly do not find it funny in any way.

So my assessment of how I’m coping with life at present is I’m Getting By.

I pray every day that God will continue to give me the strength and the words to continue to support and help Mum and hubby. It sometimes has felt as though I’m on my own in this, but my faith keep reminding me that I’m never alone, because no matter what I’m facing, God is with me, supporting me.

I pray that if you are simply “getting by” in life too, you will always remember that God is with you through it all.

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.

Last Saturday in Respite Care Request I spoke about how this week my Dad, who suffers from vascular dementia, was going into a local care home (David Walker Gardens) for a week’s respite care, to give my Mum, who cares for Dad at home, a rest.

I had taken Monday off so that I could help Mum get Dad ready to go to the care home, and then obviously take him there. I didn’t sleep terribly well on Sunday night as I kept thinking about how sad it was that Dad’s condition had deteriorated so much that he now relies completely on others to do just about everything for him now.

I was at the doctors early on Monday morning and when I got home, I got a phone call from Mum – she was getting a bit stressed as Dad was refusing to get out of bed and didn’t want to go to the care home. I tried to reassure Mum that as Dad was likely to forget within a few minutes, the conversation he’d just had with her, he’d probably get up in a wee while and be ok about going to the care home. I agreed to have my lunch and then head over to help get Dad ready.

When I got over to Mum and Dad’s, Dad was up and dressed, although Mum intercepted me at the front door to tell me Dad was still refusing to go to the care home. Mum had packed a small case for Dad, so I took that out to the car before Dad even knew I had got there. We managed to convince Dad to come out with us, by telling him we were going to see my Aunt – my Aunt lives at the same care home my Dad was going into for the week.

When we got to the care home, I think Dad had completely forgotten our earlier discussions, as he was fine when we went to his room, with his suitcase and then left him in the hands of the care worker. That was the tough bit, leaving Dad, and I know it was even harder for Mum.

As with the last time in November when Dad went into the same place for a week, Mum and I agreed we should not go and visit Dad during the week – in some ways this sounds harsh as I know Dad will be totally confused about where he is and why he;s there, however how is Mum going to get a break and relax if we keep going to visit Dad each day?

I was working on Tuesday and Wednesday, but after work both days I spent some time with Mum after I finished at work – going for coffee, shopping or dinner on both nights.

On Thursday Mum had one of her friends round for coffee and a blether in the morning, and in the afternoon Mum and me dealt with some of my Aunts business and then we headed to Silverburn shopping centre, for a wander round the shops and some dinner. Now here’s the surprise, between us we only bought one thing at the shops! – Mum bought herself a jumper. By the time I got home I was feeling really sore and very tired, so just spent the rest of the evening relaxing, despite all the housework needing done.

On Friday, Mum wasn’t feeling 100% so rather than go for a run in the car somewhere as we’d previously planned (which fitted in fine as both hubby and me weren’t feeling 100% either), we just went out for a sandwich for our lunch and then I picked up a few bits of shopping. Mum said she was quite happy to just spend the rest of the day herself relaxing.

Today, I was at the hairdressers in the morning, and when I was finished there, Mum and me headed out to the shops for a wee while. We’d planned to go through to Stirling with my hubby but he still wasn’t feeling too good.

The week’s been a mixture of ups and downs – between Dad going into the care home, some issues I had to get resolved at work, being in a lot of pain quite a few days this week, and feeling (and being) very emotional quite a lot, which if you know me at all will know I find it very difficult letting others see my emotions, so it’s been a all round tough week.

Part of me is glad this week is over, but part of me wishes it wouldn’t end, as although I hate the thought of Dad being in a care home, I know it’s what is needed to give Mum a well-earned rest from caring for Dad at home 24/7. Personally I don;t think Mum’s going to be able to care for Dad at home all that much longer as she’s finding it more and more difficult as Dad’s condition deteriorates, and his needs become more demanding on her.

We go to collect Dad from the care home and take him home on Monday, so I’d appreciate your prayers for Mum and Dad on Monday, as it’s likely to be difficult, as Dad will be very confused about what’s going on and where he is. The social worker assigned to my Mum and Dad is due to visit my Mum again in the next week or two to “discuss the future”, so I’d ask that you pray for Mum, Dad and the social worker,that the right decisions might be made for both Mum and Dad so that they can both live a comfortable life – I know there’s going to come a time soon when Dad needs to go into a care home full-time. When that time comes, it’s going to be tough, but ultimately I know looking after Dad 24/7 is definitely having a detrimental impact on Mum’s quality of life and her health.

Thank you all for your continued support during these difficult times for my family.

Have you noticed the common theme of my blog posts this last week?

They were all about patience…

Patience is something some of us have and many of us strive to obtain. It’s something we all need at times, but many of us fail to use when we need it.

Personally patience has always been something I’ve never had much of. However over the last 10-15 years I know I have become a more patient person – That definitely does not mean I am always patient, far from it. I have made a conscious attempt over the last while to become a more patient person, as I was well aware of the negative affects my impatience was having on both myself and those around me.

There are many around me who also find it difficult to be patient…but I would like to mention one in particular to you today, my Mum.

If you’ve been reading my blog posts for a while, you’ll be aware that my Dad suffers from vascular dementia and has deteriorated very quickly over the last year or two. My Mum is currently still caring for Dad at home, although she is finding it increasingly difficult cope with Dad, despite social work helping with some things these days. Mum often says to me and others, that she prays constantly for patience…

Because of Dad’s dementia, it is very waring for Mum caring for Dad, both physically and emotionally as constantly having to explain and repeat thing must be exhausting for Mum, nevermind coping with some of the strange things Dad does!

Patience…

Patience…something we all wish we possessed.

Patience…rewarding when we possess it.

Patience…something God can help us find.

Patience…pray for it!