Tired, tearful, worried, anxious and having a meltdown

[choccy]

Hello I'm new to this support group, having found it by chance on google.

My Dad Joe was diagnosed With Vascular Dementia and dysphasia about 2 months ago. He also has some sensory deprivation due to blindness in one eye (after a corneal transplant) and glaucoma in both eyes.
His symptoms started about 7 months ago, but I guess we were hoping for the best and put it down to 'old age'. He's 76.

I'm not sure what 'stage' he's at but Ill give you a brief summary:-

He knows who he is and who close friends and family are (when he can see them), he forgets people he has not seen for a long time until he's reminded who they are.

He can make decisions for himself if all the information is given to him, but will forget shortly after. He is still very clear about what he wants.
He becomes confused easily, and gets quite agitated with himself.
He hallucinates and sees people in his bungalow, then feels very embarassed when he's reassured and realises there's no-one there.

He is two weeks back home from Hospital after an 8 week assessment and is still trying to settle in. He has forgotten basic things like how to turn on the shower, but with repetition it seems to be coming back to him.

He is having a re-enablement team for 6 weeks.. 3 carers a day, breakfast lunch and tea time to prompt him with his HUGE quantities of eyedrops and a few tablets, and to prompt him and aid him in making a meal.

I live about 45 minutes away with my partner and 17 year old son. We all work full time. I don't drive but my partner does. I work nights. I'm currently spendig my days off driving up to Dad's doing shopping with him, going for walks, keeping him company etc. We've started looking for houses to rent nearer to Dad this week. I've applied for the attendace allowance today... goodness, there was a lot of paperwork! And also printed off the LPA forms ready to fill out.. the CPN suggested we do this quite soon, however, she did say that my Dad is still able to make his own decisions at the moment.

I feel a bit lost at the moment, I have 3 brothers, two of which live abroad and the 3rd I feel a bit let down by, he lives nearby and in the 8 weeks dad was in assessment he didnt visit once, he's been to visit once since he returned home.

My partner is an amazing support and I fear he's getting the brunt of my emotions at the moment. I can't stand to see my Dad so vulnerable and confused. It's so very sad when someone so strong and dependable becomes so scared and confused. I feel like I want to be with him and look after him every second.
I hate having to come home and leave him for work. I phone him several times a day and often he is agitated thinking there is someone in his bungalow, we go through a tour of the place while he's on the phone, then he gets embarassed to find there's noone really there.
He misplaced the receiver the other day and I could hear him explaining to 'someone' that he was right all along and I WAS coming to visit him tomorrow and that the carer will be here shortly so you better go home soon. He was alone. This distresses me.

He was originally admitted for assessment after he was found on the street looking for someone to help him get the people out of his bungalow because he was tired and wanted to go to bed.

I fear that he will do this again.. but not be so lucky with who finds him.. last time it was a passing social worker.

We have a weeks holiday booked for the 4th of August, booked last year, I so desperately need a break, but I am worried sick about leaving him. The CPN has told me to ring the social worker and they can maybe arrange for an extra night time visit just to check on him before bed. I've not slept more than 4 hours in one go for nearly three months, I feel shattered. Sometimes Dad can phone me up to 7 times a day.. also while I' at work, just for reassurance about when I'm visiting or if he has anything to do that day or if any nurses or carers or social workers etc are visiting that day. (He doesnt differentiate between the professions, he sees them all as nurses or doctors)I can't visit him thurs-su n ecause of work and travel.

He believes he is going to 'get over this' and recover. I tried to explain the dementia to no avail. Now I stick to 'memory problem'... he says 'what memory?' and starts laughing.

He still has his sense of humour and enjoys old comedy films (when he can work the dvd player).
He can be hard to understand to people who don't know him because of the dysphasia, I can usually understand him after we've had a few laughs at his use of wrong words for things, he finds it funny but I can see fear in his eyes at the same time.

I'm sorry for this post being so long but its helping me as I'm typing, I haven't talked to anyone about this apart from my partner.

I find myself feeling jealous when I see elderley people who still have capacity and quite angry that my wonderful Dad is losing his.
Anyway, I will stop rambling on for now. my eyes are red raw from crying!
I'm so happy I found this support group.
Going to view another house tomorrow, with 3 beds... then at least if I need to I can have Dad with me.... I don't know if its financially doable yet, but I'm going to look into it. At the moment we're like everyone else.. robbing Peter to pay Paul... blooming recession!!

Anyway, thanks for being here.
Lisa

 

[Michele]

Hi Lisa,

I just wanted to send you a really big ((((((((hug)))))))).

Love
Michele
xx

 

[Izzy]

Me too Lisa. It really is heartbreaking. I know exactly what you mean about feeling jealous and angry when you see others of a similar age who have full capacity. I know it's not right but I so often find myself saying 'it's not fair' when I see others the same age as Bill who are still very capable. It's an awful disease but I'm glad your dad has you to look out for him. Also glad you have such a supportive partner. I hope you manage to get your holiday. Would there be any chance of your dad going into respite for a week while you're away? Take care. x

 

[nicoise]

Hello Lisa,

Firstly welcome to TP - but I'm sorry you had to find us because of your Dad's illness. I do hope that you will find advice and support here - it certainly has been a lifeline for me.

Remember what you read here is always about an individual's situation - all stories are different - but sometimes there are common problems and hopefully you will find help for whatever your particular problem is at the time.

Your post came in the middle of the night - so you really aren't sleeping well, and I'm not surprised. I have to say your post read very much like my mum's story initially, and it sounds like you are beginning to realise what problems your dad is having, but don't really know how to deal with it all just yet.

The care package that is in place via the re-enablement team post-hospital sounds pretty standard (and actually quite a lot better than some on this forum are provided with). And that there are areas that he is improving in, but it can be very shocking to realise that certain activities that he used to cope with fine now seem to be a mystery to him. I hope that he continues to regain some of his abilities with this support.

Don't panic that you can't sort this all out today, much as you'd like to. Most of your dad's needs are being taken care of, but perhaps the key area is his safety and protection. It may be that a care package just can't address the wandering problems (there are devices that can sound alarms, trackers, recorded messages to the person) and that might be the trigger for whether being alone in his house is the right thing for him, or whether he is too vulnerable because he can't make a judgement for his own safety any longer.

The hallucinations could be helped with medication - you would need to speak to his consultant/CPN about that.

I do feel for you - it is heartbreaking to see these changes. But you must also look after yourself, and your health, relationship and family are very important as well.

Please do come back and let us know how you are getting on.
Best wishes

 

[Pookie.]

Hi there. I'm new to this forum too and have just recently found out that my mother has alzheimers all be it in the early stages. However I am seriously not coping. I'm like you in that I have feelings of anger because it all seems so unfair. At the moment my mum is blaming me for her illness so I'm getting a mixture of abusive phone calls and silent treatment! Very stressful. Mine is a very long and complicated story as Mum has always been hard to deal with even before she was diagnosed. She wont get LPA sorted out which I'm worried sick about. She is hell bent on staying in her house but if she doesn't get the LPA done and she needs more care (she has a carer once a day) that exceeds the ceiling amount social services will pay - she will lose her house and have to go in to a home. My husband and I have sought legal advice and have advised her as best we can but she thinks we are making it up and believes everything everyone else tells her - people who don't know or understand LPA's. I was due to take her to a Solicitor last week but her so called 'best-friend' whose own mother in law in her 90's also has the disease - talked her out of it. I'm so angry with them and feel like they have stabbed me in the back. I just feel like I'm banging my head on a brick wall or the time and not getting any support from anyone. I also have a brother and sister who fell out with mum 3 years ago and so have nothing to do with her and I feel so angry about it all. My husband works in London so is up at 5.30 and not home until 7.30. He helps me as best he can but it's not him who gets the abusive phone calls etc. I have 2 young children and I just seem to take it out on them all the time - I'm always stressesd. I phoned Social Services Monday but they have changed their department, all moved to new offices and Mum has a new Care Manager - no-one informed me of this which I'm furious about. He is on holiday now so have to wait a week before I can speak with this new stranger. I'm so frustrated because all I'm trying to do is help Mum and keep her safe but I just keep hitting brick walls all the time with her and these professional people. Anyway I just wanted to say that I do totally understand how you are feeling. Keep in touch. X

 

[simonphillips]

A few weeks ago, desperate and afraid of the future I found this place. To know you aren't alone; that the feelings you have are the same as other people and you aren't a monster; somewhere to vent and air frustrations others don't want to hear; even virtual hugs mean that I can cope better and I am sure it will mean the same for you.

((((Hug)))

 

[Sylindria]

To pretty much everyone on this thread so far (and probably those who post after me as well) *hugs*

I've got to go with Simon here - you are not alone - and it's good to have somewhere to come where people understand. While no two cases are the same we have similar reactions and the support's invaluable.

 

[Jimbo67]

Having been a lurker on here for some time now, I must agree with what others have said Lisa. I think that this forum has been a wonderful place for help and support, and helps you realize that you are NOT alone with your problems. The people on here are so friendly and helpful, it helps you come to terms with a lot of the day to day problems that we face. Since my mother was diagnosed with FLD I thought I was alone in the world struggling with the day to day care of Mom. I too have a brother that has not the time to spend helping me and my partner care for Mom so it falls on us to do everything. I too have a FANTASTIC partner who has helped me cope with Mom and cope with the troubles I am having ( depression and anxiety )and some times I just take her for granted, when really she deserves a medal as big as a dustbin lid !! Since finding this site it has helped me tremendously it has taught me things that I would never have known, and it seems that no matter what time of day or night you post, there is always someone out there willing to give you a hug....And that alone can be the most helpful thing that anyone can ask for.

(((((((((((Hug)))))))))

Jimbo

 

[Dottie]

Totally echo & agree with Jimbo, I sometimes wonder if we are all leading parallel lives we all have so much in common

You are never alone on this site Lisa, hugs from me too ((((hugs))))

Love Dottie xx

 

[choccy]

Thanks

Thanks everyone it really helps to know I'm not the only one going through this craziness!

offloading my feelings to you all helped me to think much clearer. I have decided to move nearer to my Dad and become his carer 4 days a week. I'm going to hand in my notice at work after my holiday in August. I spend all my time traveling to see him and worrying about him when I'm not there.. and he spends all his time 'waiting' for me to come back lol.

It seems to make sense. My partner supports this and my dads social worker is all for it. I will be able to claim a few benefits to help financially, but I just need to be nearer dad. These next few months could be the last I get to spend with my 'real' dad and I don't want to waste them on travelling, stressing and working. He still knows me and still makes his own decisions, so I think the time is right.

Thank you so much for your support, I guess I'll probably need it more frequently in the future!

Be strong Lisa

 

[JackMac]

Hello

I find myself feeling jealous when I see elderley people who still have capacity and quite angry that my wonderful Dad is losing his.

wow, that's the first time I have heard anyone else say that and I do the EXACT same thing all the time! phew, that is reassuring that I am normal! I see old ladies at church in their 80's and 90's and think 'that's not fair, my mum's 72! why can't she be like that?'
I tell myself off for thinking it as some people get dementia a lot earlier than this but we can't help what comes into our heads can we!

You are clearly VERY caring and doing the best you can for your dad. I often bury my head in the sand when I'm not with my mum and pretend it's not really happening. Then I see her again and feel devastated. It's a bloody awful disease isn't it.

jackmac

 

[jennifer_eccles]

I have a system that the local authority pay for. It is a complete care minder service, There is a smoke alarm, carbon monoxide alarm, pendant, front door alarm, tracker Which left in a pocket will always show where he is, and even a bed alarm. the front door alarm activates if someone opens the door because it dials through my mum is stops in her tracks wondering what the noise is, if she doesn't and leaves the house, the company would phone you and if you are moving nearer your dad, it'd be quicker to find him.
Carers support may help you find the service near you. http://www.crossroadsce.org.uk/
good luck

 

[dottyd]

in a similar boat-sadly!

Mum is a bit older-has been aricept for about a year which has helped a bit.

 

[concerned1947]

I have similar feelings of envy when I see couples recently retired having fun going on holidays etc. This awful disease crept up on my husband when he was 64, he is now 67 and I am 64 in a world that is increasingly becomming smaller and isolated. We only married 4 1/2 years ago and do not have a 40 year history that so many other couples have. His son only provides support when I specifically ask and I often feel at breaking point when the paranoia is directed at me. There are times when I feel like walking away but I know I would not be able to forgive myself if I did.