Distressed and fighting tears

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1

There are so many questions that mill around in your head when you or a loved one is diagnosed with PD, but how on earth does one decipher which questions to seek answers to first. My wonderful Dad started slowing down in March 2013 (my dad has always been a slow walker and quiet speaker) but come April he was shuffling along and seemed vague, I thought that he may have a brain tumour because he has previously had Cancer. By June, dad could not walk with the aid of a walking frame, even with this he takes forever to get anywhere and now his feet stick to the floor and walking is impossible.

Mum is Dad's main carer, I am their chauffer, representative at appointments, shopper etc etc etc.. you get the picture. However, I have a brother and sister who do nothing to help and the pressure is building up. I have so far managed to keep up beat and not freak out, but today has been the hardest and I am fighting to keep the tears at bay. All the questions that I knew I wanted answers to have now gone out of my head, we are seeing the Parkinson's nurse finally in a couple of weeks and my mind is now completely numb.

Can anyone please advise what questions should I ask, I am so scared that I am going to lose it  in front of the nurse and upsetting my Dad by him seeing me upset.

Thank you and God bless

xx

2

Hi Brandi

Coming to terms with my diagnosis was incredibly hard for me and my family (I'm 34 and have early onset Parkinson's). I write a blog about my Parkinson's which you might find useful (www.dialoguewithdisability.blogspot.co.uk).

Questions I would ask: make sure you ask about getting in touch with an Occupational therapist; they can be a great source of practical advice for coping with the daily challenges. Ask about the different treatment options (take a pen and some paper or get the PD nurse to write a letter with what you discussed); coping with PD is, I believe, empowering yourself with knowledge so you can take charge or least have a voice in the treatment. I felt things were happening to me and this felt very disempowering. It might be useful to get in touch with a PDUK support group, your PD nurse should know the details.

You and your Dad are probably very anxious about the future and the prognosis of PD; my advice is that the progression varies so much from person to person that it is not possible to predict. Try to make the most of the present. You are not living in the future so don't try to change the future. The future is currently unwritten. Write it as you go along.

I wish you and your family all the best

dr jonny

3

Hi Brandi

I am so sorry life is difficult for you.

i can only advise you to keep a small notebook with you and write down each question as it comes to you.

Give the list to the nurse and explain you keep forgetting things you need to ask her.

Ask her to send you a letter outlining the advice and info she has given you.

You can also phone the PDUK helpline and get sympthy and advice any time.

My husband has had Parkinson's for 13 years and is still able to get about and enjoy many activities.

Good luck!

GG

4

Hi Brandi,

               You have taken the first step by joining this forum. I have found it immensely helpful and supportive. I fully concur with the posts above. I'd like to add to them.

When you get your nurse I hope you find what I found.....an empathetic and very knowledgeable lady. I have phoned her twice and both times my mind was put at rest. I hope you find the same.

Secondly you must ask for help if you are under pressure. I found this a big hurdle to get over. I have now accepted I can't do everything for my self. What I can do, is as much as possible and ask for help with the rest. In this bracket come carers, social workers and medical personnel. If you don't ask you don't get.

Goldengirl hit the nail right on the head with the notepad idea. I keep a diary of all problems encountered. If I don't do this I forget. I write down bullet points before phoning, if phoning up for help.

Something I learned from a very clever psychologist I worked with at one time, which is very important......Time Management. Minds go into overdrive when you try to do too much too quickly. Plan and organise and build in time for YOU. If you burn out you will be no use to anyone. Link below might be helpful.

www.nhs.uk/Conditions/stress-anxiety.../time-management-tips.aspx

Talk to your brother and sister. Arrange a family meeting to see if you can share part of your load.

Shopping.....what about home delivery?

Mobility......electric scooter / wheel chair? To help get your Dad around.

Finally I was very poor at putting across my point of view medically. You should find the experts will have come across so many similarities they will understand you.

One example I had was this......

I wake up in the middle of the night and I feel jittery, I get a lost feeling and have to get up and wander about till it passes. I thought this wouldn't make any sense to a consultant or specialist nurse. Far from it they told me they knew exactly what I was talking about.

You will find on here people in the same boat. They have experienced similar problems. None tell you what to do they simply offer helpful suggestions.

One thing stands out for me....I am not alone.

With best regards for a suitable outcome, Orpheus.

 

 

 

5

Hi Orpheus

 

Thank you for replying. I think yesterday was just a bad day. I do keep a diary for two reasons, one mainly was because the trouble we had getting appointments, treatments etc so I kept notes of everyone that I contacted, complained to etc and secondly I know what it is like trying to remember things, both of my sons are autistic and have numerous doctors, consultants etc so keeping a diary was a big help when trying to remember appointments and what you have been told. My poor mum bless her is struggling to remember things lately so I started the diary as soon as I noticed the symptoms.

Once Dad had to give up driving I arranged home delivery for her shopping, but usually most days I am at the shops because she has forgotten something.

I have considered a wheelchair and have been looking for models that would fit in the boot of my car.

As for talking to brother/sister, I have tried numerous times to get them to help but it only ends in huge arguments so I am unsure how I am going to approach this one...

I sat down this morning and looked through the diary and questions that I have scribbled down and made two lists, one that I will ask the Parkinson's Nurse, the other list I found answers too on this Website so my head is almost clearer now.

This web site has definitely been a god send and the replies I have received have bought comfort.

Thank you for the advice Orpheus and I wish you all the best

 

 

6

Hi Goldengirl

Thank you for your reply. I had a good look through this Website last night and went through my question list and found the answers to most on site, I wrote a separate list of questions that I have put by for the Parkinson's Nurse when we see her.

I'm glad that I found Parkinson's UK, now that I have joined as a member and joined the forum and read how others are coping I know that we are not alone.

We as carers must keep our spirits up so we can help our friend/loved one and with the support of you all here on the forum we can help each other.

I wish you and your husband all the best

X

7

HI

 

Thank for replying, I will take your advice on board. I feel more focused now that I have spoken to someone, it helps when you speak to someone who knows what challenges are ahead.

I wish you all the best

8

Don't be a stranger, the people on here are magic.

I can't speak for others, but I had my moments of doubt and pain. Never had to admit that before.

I used to be a big strong man, that's what I was. Now I am at the other end of the scale. I came to terms with it for this reason.......

Those around me repaid my years of friendship with understanding and compassion.

As the song says.....

Sometimes in our lives
 We all have pain
 We all have sorrow

But if we are wise
 We know that there's
 Always tomorrow

Lean on me, when you're not strong
 And I'll be your friend
 I'll help you carry on

For it won't be long
 Till I'm gonna need
 Somebody to lean on

Please swallow your pride
 If I have things
 You need to borrow

For no one can fill
 Those of your needs
 That you won't let show.....etc.

From Bill Withers - Lean On Me Lyrics

Pleased to hear things have eased a bit, Orpheus.

9

Hello, I care for my husband who has had Parkinsons for 14 years and know the tears, stress and change of lifestyle it brings.  Please take heart.  You get good days and bad days and days when you feel you cannot cope.  Getting some respite is really important and if you are seeing a Parkinsons nurse she will be able to direct you to organisations that will sit in with your dad so mum or you can take a break, even for a few hours.  You may have to pay depending on your circumstances.  Perhaps you could talk to your siblings and tell them how you feel and ask for help. I know it is difficult asking for help.  I find that quite stressing but generally people are happy to do so.

Take one day at a time and don't look too far ahead.  Sometimes it is enough to live and cope with the moment.  There is help of all sorts out there to make life easier, from disabled aids to help in other ways.  Does your dad see a Parkinson's specialist on a fairly frequent basis?   There are exercises that the nurse can tell your dad to do and tips to make eating and moving about easier.  Non slip mats for putting cups and plates on ways to get started with walking etc.  Parkinson's does change everyone's lives and it is learning to adapt that is very hard but I am sure eventually you will.  The tears, from experience, often come with tiredness of the carer and frustration and stress.  Do ask for some help.  We all walk different paths in life but think what a truly good thing you are all doing in caring for your Dad.  Chin up tomorrow is another day.  With kind regards.

 

 

10

Thank you.

Dad saw the Parkinson's nurse for the first time last week. For the first time in nine months since dad was told that he had PD we actually spoke to someone who explained what was going on with dad. She was disgusted that dad has NOT seen any therapist of any sort whether it be occupational, speech or physio. A speech and language therapist came out to see dad today and told him that he has mild Dysphagia.

Since speaking to the nurse she has arranged for things to get moving at last, I think the stress that I have been feeling is more to do with the constant fight I had for the last 8 months getting appointments for dad to have tests and see the neurosurgeon. At last Dad seems to be getting the help he needs, I now have the task of fighting to get carers to come in and help mum and dad.

Any way, we do the best we can don't we and all I can say is chin up. At least I have found the fab support of the Parki website.

I wish you both all the best

Kind Regards

X

11

Oh I am pleased your Dad has been seen at last.  Yes I agree it is disgraceful the lack of support and the fact that you have had to fight for this.  I totally understand this as I have had to do much the same.  The Parkinson's nurses are great and will talk about any little thing that is bothering you.  We did have one but due to lack of funds (NHS aargh!) we don't have one but my husband does see a specialist.  Get hold of Carers Support, you can find them on line.  You can have a carer's assessment which puts in place all sorts of things and they are very helpful and understanding even if you just want to ring them to have a cry.  I wish you the very best and I agree the Parki website is a saving grace.  I hope your life becomes more stable and you get the help you need.  All my kind regards x

12

Hello, my husband has had PD for 20 years, he is now finding it hard to walk, and he has started to see things which are not their.  I contacted to P Nurse, and was told this can happen in parkinsons, which I find no help at all. 

I get so distressed to see my husband so frightened like this, can anyone please help me. 

thank you x

 

13

My PD nurse asked me about this yesterday, so it must be a common occurrence. I don't have that particular side effect, so no comment was made on it.

If I did have it I would definitely be asking if any adjustment could be made to my medication. I find my PD nurse very helpful.

Try GP or Consultant if you are not getting anywhere. My other avenue would be to search the web. It's amazing how much information is out there. I haven't seen it mentioned on here, but it may be somewhere in the archives. Maybe ask Semele.

I wish you well in your endeavours.

14

Oh golly, Chestnut, don't ask me, I know nuffink.

But I am quite good at searching, and found this PUK leaflet http://www.parkinsons.org.uk/content/hallucinations-and-delusions-parkinsons-information-sheet which explains all about seeing things which are not there.

As usual, the symptom can be caused by the Parkinson's, by the Parkinson's meds, or by something else entirely. Your PD nurse's response is good . . . as a starter, but as this leaflet says your husband really needs to see his GP, to rule in or out other conditions and to see, probably by trial and error, whether - if it is thought PD-related - adjusting the meds up and down helps.

Do read the leaflet, and I hope you and your o/h get some respite. It must be awful for both of you.

Best wishes

Semele

15

Such a modest lady.....she knows loads. I wish someone would brush that cat though.

16

Ho, ho, ho. I am that cat. And I like my fur rough. I go all ginger in the sun.

Semele

17

Fur enough!