Newbie here! Feeling low

[Bingowings80]

Hi to everyone here on TP, I have been lurking around, but have decided to be brave and post!

I've got to say first though how wonderful everyone is on this forum, there are so many kind, caring and knowledgeable people on here, it is great to see/read.
I am a carer to my dad (75) who has LBD and was diagnosed last year in mid May. Although looking back his symptoms first started at the end of 2010.
We (my son, OH and myself) had moved out in August 2010, he asked us to move back into his house (my childhood home) in April 2015, we moved back as I knew dad wasn't taking care of himself, this time with two new additions to the family in the form of my daughter and son, who are now 5 & 4 respectively, eldest son is 16.

I noticed that he was very quiet and you had to initiate communication as he rarely would. Then a few months later came the diagnosis of LBD.
His symptoms have gotten a lot worse quite quickly and his level of understanding/confusion is up and down like a yo-yo, I had him tested for a UTI just before Christmas, but it was clear. I am dealing with some difficult feelings, my husband and I are so tired as most nights he wandering and coming into our bedroom looking for a way out - he ALWAYS wants to go home! He is confused about where the toilet is, even though we leave the light on, door open and the toilet seat up for ease of use, he urinates on his bedside rug, in his chest of drawers, the bin, in his shoes etc.
He can rarely get himself dressed anymore, which is in stark contrast to 6 months ago, when he might've needed a little help
The thing is, and I apologise for the long post, I just want to know if there is anyone out there in a similar situation to me where everybody inc the person you are caring for all live under one roof?

How do you cope?

I had a very rough patch before the Christmas holidays and I am finding it increasingly hard to split my time between dad, my kids and doing chores etc, I am a full time carer. Especially with the youngest two, things have become difficult in regards to getting them to school on time and helping them with homework etc as I'm knackered, the head teacher has had to speak to me about their punctuality, I told her why and she referred me to SS, but I haven't heard anything from them as yet.

My husband works long shifts and I am the only (biological) child for my dad. I have brother, same mum; she passed away almost 15 years ago, but he has cut off all ties with the family and I haven't got a clue where he is. Dad has one brother and he doesn't help at all, despite being asked to and his nieces and nephews live in London
Most of his "friends" seem to of deserted him and I have lost contact with some people I thought were good friends as I have little time for myself anymore.
There are so many other things I want to say but I think I'll leave it for now.

Thank you to anyone who might have some advice for me, although I just wanted to vent as I find no one really understands, except for the lovely ppl here on TP.

And thank you for reading my novel!!! Too long

 

[canary]

Goodness me, you are doing all this yourself?!

You certainly need more help. Im glad your dad has been referred to Social (Adult) Services for an assessment, but it sounds like you will have to chase them up. Does your dad receive Attendance Allowance? Its non-means tested and your dad would definitely be eligible for the higher rate as he is up all night. This will help with paying for extra help, over and above what SS will offer (which will vary dependent on their assessment).

 

[abz2005]

Hi Bingo

Im in the same boat as you I live at the family home with mom, dad, wife and 2 kids are aged 5 and 7. My dad has vascular dementia.

I have a brother and sister but theyre no help at all my brother and his wife do 5 weeks work at christmas expecting everyone to drop everything for them during those 5 weeks then ******s off abroad for the rest of the year, posting pictures on facebook them on the beach, bars, restaurants, etc, jealous? Probably I am. Worst of it is theyve told me theyve worked out how much pension he gets and how much he should have in the bank also that they want to sell his property when the time comes, even though it goes to my mom before it does us, so we all know what theyre planning. My sister pops in once every 2 weeks or so for 2 to 3 hours then gives me advice of how i should deal with things regarding my dad, not very helpful i might add.

Anyway hes been wandering around the house alot at night for a few months, then since boxing day hes been going out at ceazy times, 12, 1, 2am so im staying up listening out for him, dont know how i will cope when i go back to work on tuesday, i have discussed with my wife that i might leave my job if the night wandering doesnt get better in January.

How i cope, well the honest answer is i dont, if im out or try and take the kids somewhere im not 100% with them my mind is always on my dad, even when we went to greece for a week in august (1st holiday in 8 years) i couldnt enjoy it because im thinking of my dad. Even when taking the kids to bed we're always telling them to be quiet not to wake their grandad its not fair on the kids, but if i move then i worry sick about my mom, my dad can be aggressive with her (not physically, yet) again if im out im always ringing home to make sure shes ok, im stuck between a rock and a hard place.

Then theres his weeing not making it to the toilet in time, weve got so much bleach its unreal, now i hate the smell of bleach.

The worst of it is i feel so guilty because i feel alot of resentment towards my dad even though its not him its this wretched disease.

I know there was no advice in the above but just to let you know you are not alone.

 

[Penmon79]

For what it's worth Bingo & Abs I think it sounds like you need each to get together with your family and talk your situations through to try to come up with some kind of strategy. It sounds as though you need to work out with them how you are going to deal with all of this. Clearly, your situations are not going to improve on their own so you really do need to contact your Social Services departments for an assessment of all your needs.
I really do hope that you can sort something out soon.
All the very best.

 

[Margi29]

I also totally agree with penmon, you both need help, you have young children that need you, it's hard enough bringing up a family, with out this added stress !!

Respite, or Day care, get in touch with SS, as soon as possible.

Have you applied for AA and carers allowance ?? If not, don't delay.

 

[Bill Owen]

L/b/d

hi to everyone here on tp, i have been lurking around, but have decided to be brave and post!

i've got to say first though how wonderful everyone is on this forum, there are so many kind, caring and knowledgeable people on here, it is great to see/read.
I am a carer to my dad (75) who has lbd and was diagnosed last year in mid may. Although looking back his symptoms first started at the end of 2010.
We (my son, oh and myself) had moved out in august 2010, he asked us to move back into his house (my childhood home) in april 2015, we moved back as i knew dad wasn't taking care of himself, this time with two new additions to the family in the form of my daughter and son, who are now 5 & 4 respectively, eldest son is 16.

I noticed that he was very quiet and you had to initiate communication as he rarely would. Then a few months later came the diagnosis of lbd.
His symptoms have gotten a lot worse quite quickly and his level of understanding/confusion is up and down like a yo-yo, i had him tested for a uti just before christmas, but it was clear. I am dealing with some difficult feelings, my husband and i are so tired as most nights he wandering and coming into our bedroom looking for a way out - he always wants to go home! He is confused about where the toilet is, even though we leave the light on, door open and the toilet seat up for ease of use, he urinates on his bedside rug, in his chest of drawers, the bin, in his shoes etc.
He can rarely get himself dressed anymore, which is in stark contrast to 6 months ago, when he might've needed a little help
the thing is, and i apologise for the long post, i just want to know if there is anyone out there in a similar situation to me where everybody inc the person you are caring for all live under one roof?

How do you cope?

I had a very rough patch before the christmas holidays and i am finding it increasingly hard to split my time between dad, my kids and doing chores etc, i am a full time carer. Especially with the youngest two, things have become difficult in regards to getting them to school on time and helping them with homework etc as i'm knackered, the head teacher has had to speak to me about their punctuality, i told her why and she referred me to ss, but i haven't heard anything from them as yet.

My husband works long shifts and i am the only (biological) child for my dad. I have brother, same mum; she passed away almost 15 years ago, but he has cut off all ties with the family and i haven't got a clue where he is. Dad has one brother and he doesn't help at all, despite being asked to and his nieces and nephews live in london
most of his "friends" seem to of deserted him and i have lost contact with some people i thought were good friends as i have little time for myself anymore.
There are so many other things i want to say but i think i'll leave it for now.

Thank you to anyone who might have some advice for me, although i just wanted to vent as i find no one really understands, except for the lovely ppl here on tp.

And thank you for reading my novel!!! Too long

hi im bill / my wife had l/b/d 5 year ago. Pass away 2016 march last year.
Look this is going to be vary hard for you all .belive me you will need help over time. I been there . You will need s/worker .also you can have p.i.p.
This will help you with money.has you care for you dad.i will be vrey
honness .sorry im dislix so bare with me.this is a very hard road you are now on .and you will need a lot of help from all . My wife pass away last year. I look after her left work to look after her.sorry to say this can be a short illness about 5 years ..you mam (will need all the help you can give but most of all give her (l o v e) has its not her fault be there keep strong .seanding you a big wlsh cwcth.

 

[Meppershall]

Hi Bingo

My dad was also diagnosed last May and his decline has been rapid too, quite surprisingly so. It all came to a head last Septemeber when SS had let me down after an assessment (the SW appointed stated that he was onyl showing signs of mild dementia so only needed minimal help !! I was almost at breaking point). He went on to develop a UTI and ended up in hospital and from there moved to a nursing home. I won't bore you with the fight I've had to keep him there, but he has now been deemed as too high risk to be allowed home and must stay in the home whether he likes it or not.

I hadn't really heard of LBD before his diagnosis, but god what a challenge it is, I can't compare it to alzheimers as I've no experience of that, but his mood changes frighten me sometimes. During the period between xmas and new year he became increasingly violent and hit two care home staff, I was called to the home to try to sort things out, an ambulance refused to come to him because he has dementia and they said 'what are we supposed to do with him ?', and the GP refused to section him because by the time he had arrived he was calm again. It really is a very unprecitable disease, and very stressful for those of us looking in.

I absolutley could not cope any more with him on my own and although still stressed, am happy that he is safe in a nursing home. You must be exhausted dealing with a young family as well as your dad and I feel for you. I started to keep a diary of his behaviour so that I could at least try to keep a track of it, but it was very hard. I know this may be a hard thing to accept, and everyone is different, but I wouldn't let my dad near youngsters now unaccompanied because I just never know how he is going to react to people. My dad is not the man he was and that's sad, but my focus now is getting my life back on track because he is now being looked after 24/7 and at least I can relax a little.

I hope you are able to get the help you will need going forward, and you will need it with so many responsibilities. Good luck

 

[Louby65]

Hello bingo . You have such a lot on your plate but first things first . You can email social care direct and ask for an assessment . When I done that nearly 3 years ago , they were fairly quick . If things escalate you can call the duty social worker who can help immediately . I asked for my mum to be assessed for a direct payment which allowed me to pay for a carer and to attend a day centre 4 days a week . Your dad sounds as if he would benefit from attending somewhere that he can be looked after and kept busy, so that he can be naturally tired when he comes home and will hopefully sleep better . You should also make an appointment with your GP who can assess your dad and support your application for further care . The GP may also prescribe some medication which may help . My mum takes trazadone at night which has helped her sleep better most nights . As already mentioned you will be entitled to various benefits like attendance allowance / carers allowance and when assessed by social care , mention that you wish regular respite . You are doing your best to look after your dad and I know only too well how hard it is , but I don't have a young family who also need to be looked after . Good luck and let me know how you get on . Best wishes to you and your dad . Lou

 

[Bingowings80]

I just wanted to thank all of you that replied, I was feeling very low that day and your advice I will act on.
I apologise for the late reply as I have been busy with the kids, getting back into the school routine again has taken a little getting used to again after the holidays and dad is still up at night wandering, so I was really quite tired, as I know most of you must relate to.
Thank you abz2005 it's not so isolating knowing that someone is in a similar situation to yourself, thanks so much for replying.
And much love to Meppershall, Bill Owen and Louby65 xxx, I will let you know what's happening as I have now get in touch with SS and get a care package set up for him, unfortunately a LOT of the day care centres are closing here (birmingham) and they aren't offering any alternatives
So finding something for him to do isn't going to be easy, as he has lost interest in things that he used to enjoy. Hopefully there will be things that he can attend.

 

[Bingowings80]

hi im bill / my wife had l/b/d 5 year ago. Pass away 2016 march last year.
Look this is going to be vary hard for you all .belive me you will need help over time. I been there . You will need s/worker .also you can have p.i.p.
This will help you with money.has you care for you dad.i will be vrey
honness .sorry im dislix so bare with me.this is a very hard road you are now on .and you will need a lot of help from all . My wife pass away last year. I look after her left work to look after her.sorry to say this can be a short illness about 5 years ..you mam (will need all the help you can give but most of all give her (l o v e) has its not her fault be there keep strong .seanding you a big wlsh cwcth.

Hi Bill,

Firstly, I would like to express my condolences for the loss of your wife, when that point comes with my dad, I am dreading it.....although looking after someone with dementia is like a "living death" as I've heard other people say, sending you a big hug from brum

You mentioned in your post that LBD can be a short illness, is it possible to tell me more about what I can expect as time goes by, if it's OK with you?

My dad has moments when he's quite lucid, but these are becoming few and far between and recently he has started following me around the house, is this a symptom of the later stages??
When I talk to him, rarely anything he says makes sense anymore, he will start off alright and then talk about something completely different, although I do need to get him checked out for a UTI - he was last tested in Dec 2016, but that was clear.

He has difficulty separating reality from fiction, for example he was watching Jurassic Park with my two youngest and when the dinosaurs escaped he said to them to get out of the house as he thought it was real!

Lastly, and what I've found to be the most upsetting, is that he doesn't recognise his reflection in the mirror, he was diagnosed in May last year and has gone downhill quite quickly - although looking back the first signs were there from late 2010.


What I would like to know is what signs and symptoms should I look for that might indicate that he might moving in the later stages of this wicked illness and also what is p.i.p?

 

[Amy in the US]

Sorry if you've already seen these, but on the off chance it could be helpful for you or another reader:

Types of dementia: https://www.alzheimers.org.uk/typesofdementia

Lewy Body dementia: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=113

I think this may be an American group: https://www.lbda.org/learn_about_lbd

I will have to leave it to one of the UK posters to better advise you about what support and resources are available, although Age UK and the Alzheimer's Society can be good sources of information.

 

[Chinoise]

Hi, I'm a newbie too and I'm feeling low. It's nice to see people sharing similar experiences, and often worse. Sharing is caring and I feel no shame in saying I need help and how do other people do it? I can see that lots of people just do their best - like me - and it's exhausting. Well done everybody.