Heart Broken

[Heartbrokenbear]

My head is all over the place and I've cried non stop since finding out.


My father has had memory issues for many years, but always been in denial.
He's got lost at times and I always knew something was wrong, but put it down to many horrible events we suffered in our lives.


He has been formally diagnosed with Vascular Dementia and Alzheimers disease today following a brain scan.
He's likely in mid stage.


He looked at me when he was told and I saw the fear in his eyes - I feel broken, scared, like I don't want to be here anymore, if I'm honest.
I can't lose him, I have tears running down my face as I write this.

I'm scared for him, I'm scared for me.
I can't cope with thinking I'm going to watch my dad be taken away from me piece of piece.


I'm numb.

Why does this evil disease even exist, why him, he'd do anything for anyone.

So now I know I can't hide anymore that maybe it was stress, or because he was having a bad day or because he is aging.


I don't know what to say.. :'(


I love you so much dad :'(

 

[SeaSwallow]

Hello @Heartbrokenbear and welcome to the Dementia Support Forum. I am so sorry to read about your dad's diagnosis of Vascular Dementia and Alzheimer's. Even if you were half expecting the diagnosis it still comes as such a shock. No wonder that you are feeling numb at present.
Your love for your dad comes through in your post, so that must make it even harder to accept. Life can be so cruel at times. And there are just no answers to why your dad, or any of our loved ones. All we can do is to care for them as best we can.
Please keep posting on here and when you are ready ask us for any help or advice that you need.

 

[sdmhred]

Oh @Heartbrokenbear
A virtual hug for you. I remember sobbing when I realised my mum had dementia. I too had been holding onto age related memory loss for hope.
please stay here where you can find support and ask questions.
it’s a difficult journey but there will be some smiles along the way.
I write a diary thread my bittersweet magic moments. It may give you some hope, mum has vascular dementia.

 

[Gosling]

Hello @Heartbrokenbear and welcome from me too to this supportive and friendly forum. I am so sorry to read of your Dad's diagnosis. You are right it is so cruel and there are no answers as to why.
No wonder your emotions are all over the place at the moment. Members here really want to help.
Getting that diagnosis for a loved one - many of us have been there and understand only too well how you will be feeling.
Do stay with us, and in your own time, ask any particular questions you may have. It will be a difficult and challenging road ahead, but this forum will hopefully help you through it. Take care, and a hug,

 

[Heartbrokenbear]

Thank you for all your posts; I appreciate them greatly and I'm sorry that we are all in this boat.


I always believed he'd get better, but in recent years he has lost lots of weight, walks much slower and has no interest in anything.


He's been started on drugs to try and slow its progression.

I know this is a stupid question and I guess I just want to hear from others in this situation, but will my dad definately deteriorate? Another family member had Alzheimers and ended up completely unable to speak, eat or walk.




One question I wanted to ask we are about to make an application for Lasting power of attorney, which kills me to even want it, I'd rather not but should this be done immediately now given diagnosis? (This side of the year rather than next year) obviously before if/he loses capacity.

It explains a lot of things that have gone on, and have happened now, although I'd of rather put it down to other things.

I'm in shock; I've not even eaten today and can't even think about food.

I've spent the past hour in bed crying, the first time I have in a very very long time.
I feel like there will be many more to come.


I refuse to not fight but I am scared for my own wellbeing as there isn't any other family.

 

[jennifer1967]

Thank you for all your posts; I appreciate them greatly and I'm sorry that we are all in this boat.


I always believed he'd get better, but in recent years he has lost lots of weight, walks much slower and has no interest in anything.


He's been started on drugs to try and slow its progression.

I know this is a stupid question and I guess I just want to hear from others in this situation, but will my dad definately deteriorate? Another family member had Alzheimers and ended up completely unable to speak, eat or walk.




One question I wanted to ask we are about to make an application for Lasting power of attorney, which kills me to even want it, I'd rather not but should this be done immediately now given diagnosis? (This side of the year rather than next year) obviously before if/he loses capacity.

It explains a lot of things that have gone on, and have happened now, although I'd of rather put it down to other things.

I'm in shock; I've not even eaten today and can't even think about food.

I've spent the past hour in bed crying, the first time I have in a very very long time.
I feel like there will be many more to come.


I refuse to not fight but I am scared for my own wellbeing as there isn't any other family.

i would start the LPA process. do you know about benefits etc? age uk or cab can help with working out what you are entitled to and the council tax reduction. give yourself time to grieve. you are grieving for the future you thought you might have and yes losing the dad you know to one that is ill. dont look to the future trying to predict what is going to happen. enjoy the present and make memories. some of the problems may never happen but others you havent thought about could so live for the moment and deal with problems as they arise.

 

[SeaSwallow]

Hello again @Heartbrokenbear I will try to answer your questions as best as I can.
You have asked if your dad will definitely deteriorate and that is a difficult question to answer. Dementia is a progressive disease but everyone's journey is different. For now take each day as it comes, try not to look too far into the future and make as many happy memories as you can.

Regarding the POA, yes apply for this as soon as you can, once this is in place it will make life much easier as the disease progresses.

You say that there is no other family to help you, please contact your local authority to arrange a needs assessment for your dad and a carers assessment for yourself. The social workers will advise you what help may be available for you and your dad, such as a sitting service so that you can have some respite from caring. You may not feel that you need this now but it is useful to start the ball rolling.

One other piece of advice which I found useful when starting this journey four years ago. I got a note book and as I contacted different people I took note of their names, email address and a brief note of the discussion, it proved invaluable on a number of occasions.

i know that this is a lot to take in, I remember how overwhelmed I felt following my husband's diagnosis, but please take one step at a time.

 

[Dee M]

Hi Heartbrokenbear,
I know what you are going through and how you are feeling.
My lovely Mum was diagnosed with Alzheimer's over a year ago. My mum and the rest of the family were so devastated. We had suspected dementia for some time. When confirmed, the news hit like an express train. We all started on our journey with strong support from a very good GP and we have been given excellent guidance from the Alzheimer's Society helpline. There are wonderful advice booklets available through the Alzheimer's Society and they also supply forms for Lasting Power of Attorney. However, no amount of written information prepares you for the long road ahead. You have come to the right place for good advice and wonderful emotional support. I reach out to you saying that you will do a lot of crying, but there are days where you will laugh too. There will be days of frustration and days where you just hear that "inner scream" - as mentioned above, take each day as it comes. Make sure you keep yourself as well as you can, keep informed as much as possible, and come here a lot (as your time allows) to gather lots of good advice for you but, most of all, love and empathy. Make sure you get plenty of respite too. Hold your Dad's hand, sit beside him and tell him how much you love him. Talk about your happy times together and keep your dad's mind as stimulated as possible. My mum will not mix with strangers and therefore the social side of support can be challenging. Always be as kind as you can, even on the most challenging days, as my mum picks up on a person's mood quite easily and is affected by it profoundly. We cannot fathom what it must be like to be a sufferer of this disease. A frightening journey. Your dad is so lucky to have such a caring child, willing to take the journey with him and find the best support for you both. Every day is a learning process and I value each day as another day to spend with my lovely mum,
Sorry to go on and on. I send you lots of luck on your journey ahead. Warmest wishes to you and a big hug. Dee x

 

[sue2108]

I know how you feel - my lovely husband was diagnosed eventually in February this year - I cry every day often internally.
My advice is take one day at a time and learn to live in the moment. Be patient - try to remember that every time he repeats something for him it’s the first time.
Yes sort out LPOA asap. Get help with filling out forms for attendance allowance if appropriate or other benefits.
Go out and do nice things while you can.
We go for short walks when the weather allows and I find musical events to go to as he is a musician.
Ask for advice on here - people are great 😊
(((((hugs))))) to you xx

 

[Heartbrokenbear]

Thank you Jennifer, SeaSwallow, Dee and Sue including everyone else - I appreciate your kindness at the most difficult time in my life I've experienced.


We have discussed LPA and after explaining it all its agreeable, understandably he was very nervous that a decision might be made that he could make, and I've made it clear the LPA won't invoke until he loses capacity.

We've had some very deep conversations the last few days, some horrible ones, he is scared I can tell.

We are now trying to find someone who will be the certificate provider, we don't have a wide network unfortunately.

Once this is done we will submit the application.
Can I clarify, if someone asks him does he understand what a LPA is and what he is signing, and what power I will hold he can be deemed as having Mental Capacity?

I'm going to seek blood thinners too, given what I've read online at great length regards Vascular Dementia.

There are moments he seems completely normal but since diagnosis (less than 5 days ago) when he asks the same question a minute later after being told the answer I now wonder why I didn't see it this clearly before.


I've not been sleeping or eating, I'm trying to not worry my dad but we share everything and I've told him I'm really worried about him and how I will not let anything happen to him.

There are some memories that I can't even put into words now without choking back tears.


I'm really scared, worried, I have feelings of guilt - I wish so bad I had pressed sooner for medical intervention.

He had sudden hearing loss earlier this year and an MRI scan was ordered routinely which has resulted into this being discovered.
I'm convinced that he had a stroke that evening he had sudden severe hearing loss (both ears) when he previously had no hearing issues.



I'm awaiting Attendance Allowance forms, will a print off of his medical records which state 'Mixed Dementia - Vascular Dementia/Alzheimers Disease' be sufficient for DWP?


I'm seeing him a lot more than I did before, it was every few days but since diagnosis I've been seeing him daily. He said to me the other day everything seems to be going so fast (time)


He wants to remain independent and I've told him that I will ensure that is upheld with LPA for as long as possible.
I'm trying to keep my mind occupied and drive myself to focusing on him, but when I stop and think for a minute I cry, it's painful.

I tried eating earlier and just couldn't do it.

I'm taking my dad to one of his favourite places in the next few days and Christmas he will be with me.

I just honestly can't see a life without him, it all got too much the other night and I even told him I won't be able to live without him, he told me I would and I'm strong and that he'd fight for as long as he can and well, the pain of hearing him say that killed me.

 

[Heartbrokenbear]

Sending you all hugs and much comfort - I'm sorry for you all, this is a horrible cruel disease.


I can relate to how painful it is, I'm sorry if I don't know what to say, my head is an absolute mess since all this

 

[canary]

It is always overwhelming when you first get the diagnosis.
Dont be too scared, you will find that things that you dread are somehow easier when they actually arrive. And we are here to offer advice and support

You are doing all the right things

I'm awaiting Attendance Allowance forms, will a print off of his medical records which state 'Mixed Dementia - Vascular Dementia/Alzheimers Disease' be sufficient for DWP?

Attendance Allowance goes on the difficulties that you have in your day to day life, so they are not actually looking at the diagnosis as such. You have to fill in the form assuming it is his worst day and it is very easy to understate the difficulties. I always recommend getting someone like Age UK, Citizens Advice, or a local Carers organisation to help you fill in the form.

((((((((((((((((((((((((hugs)))))))))))))))))

 

[Heartbrokenbear]

Thank you Canary


Things have taken a rapid change for the worse.

This morning I called Dad to see how he was, like I've always done, and he told me he had been up all night worried about me as I didn't call him yesterday (which I had) I tried reminding him that I did, what we spoke about and that he didn't need to worry and he told me he didn't recall the telephone call we had.

Then I decided to drop everything due to this development and go and see him today and things went from bad to worse.

I got there, he didn't know how to open the front door, he lost his keys also and then when I managed to get in he told me he wanted to go home (he was at home)


I told him he lived there and he said to me he didn't, I reassured him he did but he swore blind that he didn't, he said I want to come home with you and that I had dumped him into this nursing home and he hated it - its not a nursing home.


He also told me he had nightmares last night when he did fall asleep briefly.


I'm at the point of breaking - I'm not sleeping still, or eating and I feel this is going 100 mph and I can't slow it down.

I took him out to try and calm him down, he constantly kept saying I need to get my stuff and come home with you.


As the day went on, and much reassurance he seemed to calm down and came back to earth, he accepted how bad that episode was and knows now he lives there.


I've spoken to the GP, got them to test for infections (they didnt suggest) and came back okay which was good.
But they say the new drug could be causing it, but for him to continue with it but Dad isn't going to now, and if I'm honest I agree with him. He wasn't ever this bad, not knowing where he lived before he took this medication.


I will discuss this with GP at next appointment.
Did mention blood thinners for Vascular Dementia but told he doesn't have a heart problem... that's different to what I've read online, specialist's say someone with Vascular Dementia is a good candidate for drugs such as Warafrin - so will discuss this with his GP when we next go.


I'm hoping as he's stopped the new drug he will slowly return to his previous state.


I'm scared, this is all moving so fast

He was fine yesterday but massive deterioration in less than 12 hours is unbelievable.

 

[North]

Thank you Canary


Things have taken a rapid change for the worse.

This morning I called Dad to see how he was, like I've always done, and he told me he had been up all night worried about me as I didn't call him yesterday (which I had) I tried reminding him that I did, what we spoke about and that he didn't need to worry and he told me he didn't recall the telephone call we had.

Then I decided to drop everything due to this development and go and see him today and things went from bad to worse.

I got there, he didn't know how to open the front door, he lost his keys also and then when I managed to get in he told me he wanted to go home (he was at home)


I told him he lived there and he said to me he didn't, I reassured him he did but he swore blind that he didn't, he said I want to come home with you and that I had dumped him into this nursing home and he hated it - its not a nursing home.


He also told me he had nightmares last night when he did fall asleep briefly.


I'm at the point of breaking - I'm not sleeping still, or eating and I feel this is going 100 mph and I can't slow it down.

I took him out to try and calm him down, he constantly kept saying I need to get my stuff and come home with you.


As the day went on, and much reassurance he seemed to calm down and came back to earth, he accepted how bad that episode was and knows now he lives there.


I've spoken to the GP, got them to test for infections (they didnt suggest) and came back okay which was good.
But they say the new drug could be causing it, but for him to continue with it but Dad isn't going to now, and if I'm honest I agree with him. He wasn't ever this bad, not knowing where he lived before he took this medication.


I will discuss this with GP at next appointment.
Did mention blood thinners for Vascular Dementia but told he doesn't have a heart problem... that's different to what I've read online, specialist's say someone with Vascular Dementia is a good candidate for drugs such as Warafrin - so will discuss this with his GP when we next go.


I'm hoping as he's stopped the new drug he will slowly return to his previous state.


I'm scared, this is all moving so fast

He was fine yesterday but massive deterioration in less than 12 hours is unbelievable.

I am so sorry to read your very difficult news. Sending you virtual strength to look after your own health, keep on asking questions on this forum and from as many sources as you can find. I have come to learn that there are no rulebooks for dementia - every person is different and every day can throw up new challenges. One of the hardest lessons I have learned is to try not to argue or criticise my husband's behaviour no matter how frustrating and heartbreaking it is to witness. I realised that my husband had dementia on our honeymoon 5 years ago. It must have been the fact that he was in a totally new place and had nobody he recognised except me. Within less than 6 weeks we had his diagnosis of Vascular Dementia and Alzheimer's. So that was the beginning of our married life - and a whole different future ahead for both of us. He has been in denial for most of the past 5 years, allowing no carers to come into the home. At long last he has now begun to accept a bedtime carer 5 nights a week who offers to assist him with showering and getting into his pyjamas ready for bed. I have always found the evening extremely difficult (because of his sundowning syndrome) but I can now have a brief period of respite, for half an hour, as my husband, his carer and myself sit down for a chat after the shower routine, drinking hot chocolate and eating biscuits. Sounds like such a simple thing but I can assure you that it has made a huge difference to my wellbeing and I don't dread the evenings as I did previously.

 

[jennifer1967]

Thank you Canary


Things have taken a rapid change for the worse.

This morning I called Dad to see how he was, like I've always done, and he told me he had been up all night worried about me as I didn't call him yesterday (which I had) I tried reminding him that I did, what we spoke about and that he didn't need to worry and he told me he didn't recall the telephone call we had.

Then I decided to drop everything due to this development and go and see him today and things went from bad to worse.

I got there, he didn't know how to open the front door, he lost his keys also and then when I managed to get in he told me he wanted to go home (he was at home)


I told him he lived there and he said to me he didn't, I reassured him he did but he swore blind that he didn't, he said I want to come home with you and that I had dumped him into this nursing home and he hated it - its not a nursing home.


He also told me he had nightmares last night when he did fall asleep briefly.


I'm at the point of breaking - I'm not sleeping still, or eating and I feel this is going 100 mph and I can't slow it down.

I took him out to try and calm him down, he constantly kept saying I need to get my stuff and come home with you.


As the day went on, and much reassurance he seemed to calm down and came back to earth, he accepted how bad that episode was and knows now he lives there.


I've spoken to the GP, got them to test for infections (they didnt suggest) and came back okay which was good.
But they say the new drug could be causing it, but for him to continue with it but Dad isn't going to now, and if I'm honest I agree with him. He wasn't ever this bad, not knowing where he lived before he took this medication.


I will discuss this with GP at next appointment.
Did mention blood thinners for Vascular Dementia but told he doesn't have a heart problem... that's different to what I've read online, specialist's say someone with Vascular Dementia is a good candidate for drugs such as Warafrin - so will discuss this with his GP when we next go.


I'm hoping as he's stopped the new drug he will slowly return to his previous state.


I'm scared, this is all moving so fast

He was fine yesterday but massive deterioration in less than 12 hours is unbelievable.

my husband only had blood thinners when he had a clot in his heart. they were stopped when it was all resolved. he has vascular dementia for 4 years and not had blood thinners. i dont think its an automatic step but to treat specific problems. he had a mini-stroke and he may well have another one or not. with blood thinners, they make the blood thinner but the down side is that they can bleed a lot easier and its harder to stop. my husbands skin is thin enough and he has bleeding under the skin and easier to cut. i would have to think a lot about the merits if thinners were suggested.

 

[sdmhred]

Yes I would think the pros and cons of thinners need weighing up. My Dad was on them…..he had the old fashioned type which needed regular monitoring, he had to avoid certain foods, he had to stop them prior to any procedure, he bled a fair bit…and I think perhaps worse for people with dementia..any fall near the head leads to hospital for CT scan.

it’s unusual to have such a big change so rapidly without something physical going on - have other basics been looked at - hydration, constipation etc.

I do hope things settle so you can get used to the new ever changing normal.

Theres always someone here when you need us xxx

 

[Heartbrokenbear]

6am and I've been awake all night


I'm not sure why I'm posting here but I can't do this anymore.... I've been sobbing my heart out all night and the emotional pain is constant, I have no escape.

I'm scared anytime my phone could ring, I'm scared what the next hour will bring let alone what this disease will do in the end.

I spoke to a Dementia Admiral Nurse earlier and there isn't any changing how I feel
I'm not strong enough to watch the one person who has stood by me my entire life, through right, through wrong, protected me, been there for me, cuddled me when I was in tears, told me we'd get through this be robbed of himself.


I can't do this.. I can't 😪
I won't sit around and watch my dad, be stolen from me piece of piece and not be able to do a single thing about it


I'd rather not be here, that makes me a coward but I'd rather be a coward than be living in this pain witnessing this type of suffering and we aren't even a week into diagnosis


I want this to be nightmare

I want him to be okay 😪

 

[Jessie5]

I’m so sorry about your Dad and how you are feeling.

Please call the Samaritans if you feel like this - they are there day and night just to listen.

116 123

 

[Jessie5]

Talk to us on the phone

Whatever you're going through, call us free any time, from any phone, on 116 123.

www.samaritans.org

 

[Jessie5]

You are grieving and shocked. I definitely felt exactly the same when Mum was diagnosed. It IS heartbreaking and hard, but you do come to terms with it eventually and you will find a way to live with this.

6 years on I am still grieving for the Mum I’ve lost, but am more accepting of the fact that there is nothing I can do to change the situation. And those 6 years haven’t been all terrible. She’s still in there sometimes even now she is quite advanced.

Please get some help for yourself. I had some counseling when Mum went in to a care home., which I found devastating. It really helped to find acceptance n the situation. Google ‘talking therapy’ and the area you live in and you should be able to self refer online.

I’m sending you a massive virtual hug. You are not on your own. There are 1000s of us in the same terrible boat. You will get through this and find strength you never knew you had. You will be there for you Dad I know you well. But please be kind to yourself too whilst you deal with getting your head and emotions round this diagnosis.

We’re all here for you xx