General Chat

Thank you SuffolkVera. for the cyber hug. It means a lot.

<3

AnnMarie
Have you had a Carers Assessment? I think they are done by the local Social Services Dept. They can help with getting a bit of respite care for you, anything from someone coming to your house to be with your husband for a couple of hours a week to a short stay in a home for OH so you can have a few days “off duty”.

Your husband is ill, frustrated and possibly feeling a bit frightened so he takes it out on you. He doesn’t love you any the less, it’s the illness talking. But you need to let off steam too so come on here and have a moan whenever you need to.

Sending you a cyber hug <3

Thank you Sue. Your comments make a lot of sense. I do try to see both sides of it and I understand hubbys frustration when he cant do things.

Thank you again x

I haven't added to this before as I felt I couldn't add anything useful.

Thinking about it a little more I can give you the cared for person's viewpoint if that helps at all.

I did move into my sister's house to care for her until she passed away, this was in 2004. I sometimes felt I couldn't do anything right, although I knew I was. The 'patient' can be extremely trying and doesn't seem to appreciate the efforts you are making. To explain this, as I now understand, it is a syndrome that can't be controlled or curbed.

My husband retired a year early to care for me. I was happy for him to do this as I really couldn't manage to run the house at that stage in my illness(es).

Some days he just annoyed the hell out of me for no other reason that I was feeling useless and unwell. Pain and confusion do cause us to lose the ability to think rationally and also accept help (which we resent). It's a catch 22 situation.

We want to be able to do everything that we used to do. It's really hard to ask someone else to do simple tasks for you. When they do those jobs they can: not be using the right equipment, not doing things in the right order, not doing it quickly enough, not doing it quietly etc., I'm sure you get the picture.

I have spoken with friends in the same position and there is a great deal of agreement when talking about our own personal experiences.

Support from medical professionals, family and friends is essential. Talking through the problems you encounter as a carer, honestly and regularly does help. With deterioration in mental capacity you have a double whammy as neither of you can fully express the emotional effects for fear of hurting the other. My sister wouldn't speak (not couldn't) and that left me both floundering and resentful.

So having experienced both sides of the caring issue I can honestly say that you are coping with the most difficult of situations and I admire your stickability.

I hope you get more support which you need and deserve.

Sue x

Llamedos Pam, Did your husband have any nasty side effects with the patches?

Hubby has been on the patches for 20 days and he is becoming more confused by the day. Not sure if its the patches or not.

I keep coming up against a brick wall. :(

Cant get hold of his consultant or secretary, We have to wait for nearly a month to see the parkinson nurses. Its a 3 week wait to see our own dr as they have just changed from our old drs.

Feeling really overwelmed now.

I really should be able to cope better than this.


:-S :-(

I do not think you are a moaning mini, I for one am delighted that you are getting some very useful advice. Some people on here have nursed their own partners and know of the strain you are under.

AnnMarie

Does your local age uk do a day centre

We got Michael a one day a week , we had to pay as he wasn't in receipt of any allowances
They picked him up by mini bus ,that also has wheelchair access , and they had a lady helper on board too
They had tea an toast on arrival and lunch and a tea a cakes before they left around
3.30pm
It gave me a respite and time to myself to do the weekly shop , dental or hair appt
They gave them things to do whilst they were there but if they didn't want to then no problem .

Michael could be grumpy at times or speak abruptly to me and most times I let it go .
If I was feeling off though I would pick him up on it saying don't speak to me like that it's not acceptable! I am helping you and don't need you to be nasty to me
He would say I can't help it !! I feel grumpy

I would kiss him and say you silly old fool I love you loads and we were ok again .

We did apply for attendance allowance and he was awarded it at the highest rate but that didn't entitle him to any other allowances
Attendance Allowance isn't means tested whereas others are

When filling in the form make sure you give his bad times as the norm as that's what the help is he needs .

Do you have a stair lift ? We had one put in by a company that works with age uk
They were very good . No hard sell they aren't allowed too.plus if you can get the same elsewhere cheaper they will match the price .
Age uk rang us after the installation to check we were satisfied and the company hadn't breached their guidelines

Please look after yourself, knocking yourself out won't do you any good either

Take care <3

Edit do you have a car ?? If so have you applied for a disable parking badge from your local council

Hello Pam, good to see you. what a pity you can't get a bit more respite, you must be totally exhausted mentally and physically.

I don’t come on here very often and just seen your post, I am a career for my husband who also has Parkinson’s with dementia I have been looking after him for more years than I care to think about as he was originally diagnosed with vascular dementia in his late 40’s and now he’s 76. Like you I suffer being shouted at but mine is when he can’t get his own way and it can be quite scary he spends his time watching tv continually changing from one channel to another so I’m not able to watch many programmes, I’m glad your getting some respite I only get 2 hours on a Wednesday. I’m finding it harder now as my own health is deteriorating rapidly. Take care of yourself Pam

AnninGlos,

Thank you I will do that.

AnnMarie, could you check with the pharmacist if the meds can cause confusion and if so will that be a permanent problem or will his body get used to it?

Hi Shirley,
Well we have seen the consultant and hubby has been given patches for the Parkinsons.
The consultant has also said he would refer us to the Parkinsons nurses but we havnt yet heard from them.

Our Dil has sorted all the power of attorney forms and information for us so that is another step to take. Thank you for that info.

Hubby cant walk very far so now has an electric wheelchair to give him some independance back.

I am finding it very hard to cope at the moment as he is taking out his frustrations on me, verbally.

I try to understand that he has a lot to contend with but it is very hard.

He has also become very confused. I dont know if it is the condition or the medication.

I feel like a right old moaning minny. :(


:-(

Shirley,
Thank you for all your suggestions.

There's a lot there that will help me.

Hopefully when he sees his consultant we will know more.

I am a bit miffed that we were told by letter and not face to face with the consultant especially as we are seeing him in a couple of weeks.

Anyway thanks again . :-)

AnnMarie

At least now you have a diagnosis .must say though it's taken a long time to get there

We were referred as soon as I voiced concerns to the doc . He did say at that time what are you thinking? I said Parkinson's! He said yes so am I so let's get him checked out

All the appointments and tests and scans did take time so it was some 8 months later that the diagnoses was made He had Alzheimer's with associated Lewy Bodies
He was imediately referred to the memory clinic and assessed on his ability at that time and was prescribed patches that slowed down the brain cell loss he was then seen every six months and retested to see how the condition was progressing

We were told very honestly that he couldn't be cured but he could be helped as he went on the journey . He was also referred to the local falls clinic and I took him once a week for chair based exercises , these did help him

Was also advised to do a lasting power of attorney whilst he was still able to know and consent to doing this

We only did for finances . Didn't make a lot of difference really as I always did the finances for both of us with online banking .
Was invoked a few months before he passed at the bank for his account as he became unable to get out and liked to have cash in his pocket for some expenses

If you can also do it for health then do so as I had to fight to get him home as was told quite rudely by the social worker assigned to him when he was in hospital that if SHE decided he would be put in a home then that would override both of our wishes for him as he hadn't done a POA for his health

Do hope your hubby can get some medication that will calm down some of his symptoms

Also if he does fall don't try to get him up yourself as it could cause problems for both of you . If you hurt yourself then it could put you out out of action

I was told quite firmly by our doctor DONT do it call 999
Several times I had to do that and they were at the house within half and hour and got him up and checked him over and settled him down again either in bed or his fav armchair .

Hubby too wasn't safe to get up in the night which he needed to several times for the loo. I would wake up as soon as I felt him getting out of bed

I got him urinal bottle and would stand with him to steady him as he did what he needed too. In later stages I had to help him in a more intimate way

Sooo please try to look after yourself too . I got too fussy at times and overdid the help ,let your hubby do what he can whilst he can and just be there in case

Let us know how things go .we are always here to listen and maybe put in our twopennuth ,or in my case my poundsworth !!
:-)

UPDATE> Hubby has gradually been getting worse over the past 2 yrs. He has had so many different tablets and tests over this time.

Finally in dec 2018 he had a DAT scan. Results have finally come back and it reveals he has Parkinsons Disease. Not the result we really wanted but at least it explains all the different symptoms he has been having to cope with.

He has an app with his consultant in a couple of weeks time so will have to wait and see what can be done, if anything. :-(

Shirley, yes you are very lucky with having a good doctor who cares about you.
Ours is very good at refering you to the hospital but anything else is usually put down to being 'all in the mind' or just prescribing more and more tablets. In 2015 hubby was on 28 tablets a day for numerous ailments and was so ill a consultant geriatician was called out to us. He took hubby off 18 tablets a day saying that they were not needed. He was no better after that but no worse either.

Liz, Sometimes I despair too. nights are the worst times for us too. Hubby is very confused if he wakes in the night to get up to the loo so we have to leave a small lamp on in the bedroom and the landing and bathroom light on otherwise he dosnt seem to know where to go.:( We are a bit like ships passing in the night at the moment. We usually go to bed around 10.30, read for a while and then settle down. Just lately I havnt been able to drop off so get up and go downstairs for a couple of hours. Hubby wakes very early most days 4.30 -5.30 and cant just lay there so he gets up. I get up about 7.30 - 8 am and usually hubby starts falling asleep over his breakfast or reading his paper, then he sleeps for a few hours.
But hey ho it could be worse. Some medication he was on back in the summer/autumn was giving him hallucinations and that was really scary for both of us. I do hope you break in February turns out good for you.You deserve it. xx

A good doctor is a godsend, my own is lovely. O.h.'s surgery are useless. The errors they make with his prescriptions are constant.

It never is much of a holiday for me, we have another coming up for his birthday in February. We don't go further than the Norfolk coast so as to be on hand for his father. I have to do everything from arranging the holiday, packing, packing the car, unpacking the car etc and then the reverse when we come back. The best bit is tnat we have separate rooms, so I can stretch out in bed, read when I want, etc etc. Last time we went, I left him sleeping in a chair in front of the tv one evening. Later I went down for a drink (he had a bedroom dowstairs to save his knees on the steep staircase) He wasn't in the chair and every where was in darkness. His bedroom door was open tho so I peeped inside and couldn't see him in the bed. I started to walk in and almost fell over him on the floor. I immediately thought he had suffered a stroke like his father (he had a bleed on the brain in 2008) so put on the light. He woke up and had a go at me for leaving him in the dark, which I hadn't. He said he went to his room (in the dark?) and couldn't find the bed so had laid on the floor to sleep. Is that normal behaviour? Sometimes I despair!

Lizx

I was very lucky with our doctors . They really read all the reports they were sent from the various agencies that hubby had his appointments with

On the occasions we did go to the docs I was always asked "how are you coping " if you need help then just let us know

When hubby did pass away I had a lovely card from the surgery signed personally by all the doctors and the nurses

When our doctor did visit hubby when he was home but struggling the doc said when he saw who it was he was shocked because he knew that hubby had been doing so well
It's nice that to docs you are people not just passing through appointments

My annual mot in early 2016 I was asked how I was doing and they were always there if needed and could refer me to bereavement counselling if I felt I needed it

Feel a good doctor back up goes a long way

Oh dear Liz, not much of a holiday for you, was it.
We used to enjoy weekends away but hubby is not good outside his own environment.
He hates being in company he dosnt know and like yours is very stubborn.
I read today that I should write down every night the good things that had happened that day and read back on them at the end of the month. Will try this and see if it helps.

Sharron I bought my diary today. Have started writing all appointments and phone numbers in it. Thank, you.

Wendy, Do I just go into my doctors and say I am a full time carer and can you register me?

Thank you all again.

AnnMarie. xx

AnnMarie, I don't feel as kindly towards my 'toddler' - most of his behaviour is exacerbated by stubbornness and a secret cider habit. His sons don't live locally, so there's only me to do anything for him. Twice when we have had a break on the coast he's forgotten some of his medications, the first time I drove back to fetch them. The second time I managed to get the surgery to send the six pills needed to a branch of the usual pharmacy but in the coastal town. A bit of a faff but saved a 50 mile round trip and time out of the 'holiday'

Lizxx