Help needed please

[kindred]

Yes you have that right Jezzer. I can't think of any other illness that affects the carers well being in and health and has such a huge impact on their life and peace of mind while the person who has the disease appears to be completely unaffected by it all. It does not make sense.

I have a very ill dad who does not know he is ill and he is as 'happy as Larry' while I am completely frazzled, worn out, probably depressed, angry for being put in this position, sad for my dad who is incredibly optimistic and busy making all sorts of plans for his future while I am just hoping that he will pass away in his sleep before his illness catches up with him and causes him pain.

There is nothing normal about this life. Everything I do is for my dad and he doesn't even know it. It is soul destroying and very boring. Mostly I feel physically, mentally and emotionally drained whereas dad is fine, he can do anything that he wants to and there is absolutely nothing wrong with him.

I so agree with you about the impact on the life of the carers. It is devastating. No, nothing normal about this life. We are left to find some way to wrestle with it in our minds so we can cope day after day. And in my case, horribly guilt tripped by the social services into continuing with being the sole carer with no time off or anything. They did offer me a hot stone massage. No, of course not, so demeaning. I helped my dad nurse my mum into old age with MS and that's tough but nothing, nothing like dementia. All honour to you, with love, Geraldine aka kindred.

 

[Jezzer]

Jan, what an incredible post this is, helping me too and I am sure so many others. I find waking up in the morning and getting on with things is awful. I feel cold with fear sometimes. Gxxxxwith great thanks.

Hello my friend. I too feel like that in the morning - truly horrid and fearing what the day will bring. I try and stay positive - if "positive" exists in this world of Dementia - but I have to push myself. I love reading your visit "updates" so Thank YOU! With Love, Jan xxxxxx

 

[Starbright]

I so agree with you about the impact on the life of the carers. It is devastating. No, nothing normal about this life. We are left to find some way to wrestle with it in our minds so we can cope day after day. And in my case, horribly guilt tripped by the social services into continuing with being the sole carer with no time off or anything. They did offer me a hot stone massage. No, of course not, so demeaning. I helped my dad nurse my mum into old age with MS and that's tough but nothing, nothing like dementia. All honour to you, with love, Geraldine aka kindred.

I too nursed first my mum and then my sister both had breast cancer sadly they passed away within 2 years of each other I think we knew as a family what we were dealing with though ...But this dementia is so vile it takes over your very soul ....and we as carers get carried along with it. Stay strong and take care A x

 

[kindred]

Hello my friend. I too feel like that in the morning - truly horrid and fearing what the day will bring. I try and stay positive - if "positive" exists in this world of Dementia - but I have to push myself. I love reading your visit "updates" so Thank YOU! With Love, Jan xxxxxx

Bless you, thank you Jan. Writing my updates and reading responses is the high spot of my day. Gxxx

 

[kindred]

I too nursed first my mum and then my sister both had breast cancer sadly they passed away within 2 years of each other I think we knew as a family what we were dealing with though ...But this dementia is so vile it takes over your very soul ....and we as carers get carried along with it. Stay strong and take care A x

yes, completely. I am so sorry about your mum and sister.
Yes, you can never know what you are dealing with with dementia which means your mind has to stay in the zone and on high alert all the time, including at night. It is an energy black hole. We must try so hard not to make it the only story we have to tell. Thank God for TP. So very very good to hear from you. Gxx

 

[kindred]

Hi, I’ve seen my GP and she was reluctant to prescribe medication. She suggested this forum as first point of call. I know that I’m massively depressed as i can’t function properly or remember simple things. I have messes in every room in the house which I keep saying “I’ll sort it tomorrow”!
I get in the car to go somewhere where I’ve been a thousand times and completely go the wrong way or forget why I’m in the car at all. Is this normal?
My Dad’s dementia is consuming my life and this is just the beginning really. I do like the honesty in people’s posts. There is no holding back.
My Mum is a broken woman. After 56 years of marriage she is not dealing with it very well. She is always close to tears when Dad is mentioned and cries herself to sleep every night.
I have a younger sister (46 I’m 49). She is taking anti depressants which has helped I think. And I’ve never eaten so many takeaways in my life!!
Again many thanks
Jerryfishman

You are describing the after effects of shock and trauma, Jerryfisherman. It affects the memory and functioning massively. It will get less. Listen, dementia will consume our lives, it is a greedy beast and will take all our mindspace. We have to battle not to let it. It becomes almost an addiction. Please, jhowever hard, put other things back in your life, even if only thinking about them for a few minutes. You may not enjoy them at first, may feel all the happiness has gone out of them but keep in touch with them, please. I have found this world cup useful from that point of view, know it sounds pathetic but have to fight hard to keep some headspace free of dementia. I am so sorry about your mum, too. So good to hear from you. warmest, geraldine aka kindred.

 

[Starbright]

yes, completely. I am so sorry about your mum and sister.
Yes, you can never know what you are dealing with with dementia which means your mind has to stay in the zone and on high alert all the time, including at night. It is an energy black hole. We must try so hard not to make it the only story we have to tell. Thank God for TP. So very very good to hear from you. Gxx

Your so right ...there are always lighter sides and dare I say sometimes P is quite funny still get the odd quip now and again ....I’m new on here and posted a few times and I’ve received so much help and kindness it’s a marvellous place T P and so glad I found it. So thank you so much... Ann x

I’ve just looked at the little symbol on the left hand side it says 50 have I really my goodness

 

[Shedrech]

hi @Jerryfishman
good to know TP is helping
you might also find Admiral Nurses worth contacting as they are there to support the carer and family
https://www.dementiauk.org/get-support/admiral-nursing/

 

[Canadian Joanne]

@Jerryfishman, although I understand why your GP may be reluctant to prescribe medication, it might still be an option for you. I find depression tends to run in families and if anything can grind a person down, it is caring for a person with dementia.

If you are still feeling as low and unmotivated in a couple of weeks time, if I were you, I would return to the GP and suggest a trial of a couple of months. It does take time for most anti-depressants to kick in.

 

[Jezzer]

You are helpless - we are all helpless.

I was thrown into my situation savagely at the beginning of last year. I am 24/7 sole carer with no respite, for my partner who has dementia and other health issues. A really horrid illness kept him in hospital for 6 weeks and meant major life changing surgery. The dementia had advanced rapidly during his illness.

I had just 2 days notice that he was coming home - he could not care for himself.

In the space of that two days I had to close my small business down ( and it was the only one of its kind in the country) and stay at home.

I am angry too, so angry and cheated.

And I think that is how you feel. I lost my lover, my partner, my business, and my career at one fell swoop.

Eighteen months later, I am still angry, and cheated, and disappointed that our lives will never be the same.

Please, I know it is hard, very hard. But try to pretend that your Dad has gone somewhere else, this man, is not now the Dad you love, he is someone else. Because this horrible disease has taken your Dad away and put someone else in his place. I try to do that with my partner - it's not nice, it's not the same, but I am becoming to love this strange person I now live with, in a different way.

This dementia has so many victims, and not just the people with the disease. I would not wish it on anyone.

Try to find something good in each day - no matter how small. It has taken me 18 months to get to where I am now, and I have still a way to go before I have come to terms with what has happened.

You will get there, it will take time, don't be hard on yourself. Remember the good times with Dad. Emotions like anger, feeling cheated etc are powerful, but destructive, and you and I both, need to work our way out of them

It will happen - eventually

@maryjoan I am so sorry to read what has happened to you. Bad enough that your partner has this awful disease but to need major and life changing surgery too. And then you lose your precious business and career. Truly dreadful. You have every right to feel angry and cheated. And yet, despite all this, you take the time to offer comfort and support to someone struggling with the effect of this wicked and cruel disease. You are a special person. You recognise that the feelings you have are destructive and are trying to work through them. I just want to wish you well and say you represent everything that is so wonderful about TP. Take care.

 

[maryjoan]

@maryjoan I am so sorry to read what has happened to you. Bad enough that your partner has this awful disease but to need major and life changing surgery too. And then you lose your precious business and career. Truly dreadful. You have every right to feel angry and cheated. And yet, despite all this, you take the time to offer comfort and support to someone struggling with the effect of this wicked and cruel disease. You are a special person. You recognise that the feelings you have are destructive and are trying to work through them. I just want to wish you well and say you represent everything that is so wonderful about TP. Take care.

Thank you for those kind words - I am no one special - but everyone on here is very special. We have all been given a burden we do not want, that we cannot shed.
And so it goes on.

We will help each other because TP is a better place to be than any number of books, or TV programmes or other worthy ways of 'telling us' how to deal with dementia in all its forms - because everyone on here knows what it is all about.

take care

 

[Jezzer]

Thank you for those kind words - I am no one special - but everyone on here is very special. We have all been given a burden we do not want, that we cannot shed.
And so it goes on.

We will help each other because TP is a better place to be than any number of books, or TV programmes or other worthy ways of 'telling us' how to deal with dementia in all its forms - because everyone on here knows what it is all about.

take care

Ah well we will have to agree to disagree because I believe you are indeed special! I do agree that we have been given an unwanted burden we cannot escape. I was so impressed to read that a member's GP recommended TP.
If the professionals are seeing TP as the wonderful forum it is and how it helps us, that has to be a good thing. Nothing has helped me like TP, no counselling, talking to a psychiatrist, and, as you say, books and TV. I love the genuine love and care but also feel humbled by carers who share the very raw pain they feel and the unflinching honesty. A special forum full of special people, each of them invaluable. You Take Care also xx

 

[maryjoan]

Ah well we will have to agree to disagree because I believe you are indeed special! I do agree that we have been given an unwanted burden we cannot escape. I was so impressed to read that a member's GP recommended TP.
If the professionals are seeing TP as the wonderful forum it is and how it helps us, that has to be a good thing. Nothing has helped me like TP, no counselling, talking to a psychiatrist, and, as you say, books and TV. I love the genuine love and care but also feel humbled by carers who share the very raw pain they feel and the unflinching honesty. A special forum full of special people, each of them invaluable. You Take Care also xx

Off to see the counsellor this morning on the recommendation of the social worker - not sure it is helping, but it is a little walk out for me!!

 

[Jezzer]

Off to see the counsellor this morning on the recommendation of the social worker - not sure it is helping, but it is a little walk out for me!!

Well it's worth a try and I hope it does help. A walk in the sunshine is good. Take care xx

 

[Starbright]

Ah well we will have to agree to disagree because I believe you are indeed special! I do agree that we have been given an unwanted burden we cannot escape. I was so impressed to read that a member's GP recommended TP.
If the professionals are seeing TP as the wonderful forum it is and how it helps us, that has to be a good thing. Nothing has helped me like TP, no counselling, talking to a psychiatrist, and, as you say, books and TV. I love the genuine love and care but also feel humbled by carers who share the very raw pain they feel and the unflinching honesty. A special forum full of special people, each of them invaluable. You Take Care also xx

Hear hear !!! . A x

 

[Starbright]

Off to see the counsellor this morning on the recommendation of the social worker - not sure it is helping, but it is a little walk out for me!!

A walk in the sunshine before it gets too hot ..a little space on your own ...I do hope the counselling helps you.
Take care A x

 

[Shedrech]

hi again @Jerryfishman
apologies, I missed in your opening post that your dad has been diagnosed with Lewy Bodies Dementia
I wonder if this website may be of help to you
http://www.lewybody.org/
these pages on the main AS site
https://www.alzheimers.org.uk/info/20007/types_of_dementia/7/dementia_with_lewy_bodies
and these booklets
What is dementia with Lewy bodies (DLB)? (403)
Dementia with Lewy bodies: Understanding your diagnosis (37)
sorry to swamp you with info, I just feel more settled in my own mind sometimes if I know more about what I'm facing
do start another thread with anything that's on your mind - I hope it helps to share
best wishes

 

[Izzy]

@Jerryfishman - I hope you're ok. The thread seems to have moved away from your original problem. Please do come back here and let us know how you're doing. I think @Canadian Joanne gave good advice in her post -

If you are still feeling as low and unmotivated in a couple of weeks time, if I were you, I would return to the GP and suggest a trial of a couple of months. It does take time for most anti-depressants to kick in.

Edit - sorry I cross posted with @Shedrech who has brought the thread back on topic!

 

[Jezzer]

@Izzy Apologies - believe its my fault we veered off topic. @Jerryfishman - I'm so sorry for hijacking your thread. Wont happen again. I do hope this has not kept you away.

 

[Jerryfishman]

@Jerryfishman - I hope you're ok. The thread seems to have moved away from your original problem. Please do come back here and let us know how you're doing. I think @Canadian Joanne gave good advice in her post -



Edit - sorry I cross posted with @Shedrech who has brought the thread back on topic!

Hi everyone, I’m a bit confused with replying to different members. Sorry if I’ve done this. But I love everyone’s replies whether it’s for me or not
I feel slightly lifted as from yesterday afternoon. Very strange! I set my alarm and actually got up and went to work at the time I agreed with a customer (self employed maintenance).
I visited Dad in the care home yesterday for about an hour and a half, and today for about an hour. Both times he was absolutely sound asleep. Tried to wake him many times but he was having none of it!!
I don’t mean to be disrespectful but I have taken on board a bit of everyone’s advice but not thanked you personally.
First of all I’m going fishing tomorrow (feel guilty already) and playing a round of golf next week.
These are the things that I used to enjoy but you can count the times I’ve been on one hand in the last two years.
Please keep the replies coming as I’m sure they’re helping.
Forgot to mention that the care home is closing the end of September. How sad is that?? Will have to relocate Dad and the process will start again with the carers having to get to know Dad and his ways.
My Dad and sister are registered blind so we were relieved when we found this care home so close to my sisters house. Just another stress to deal with!
I can’t thank everyone enough for your support, please keep it coming.
Best wishes
Jerryfishman