Please help


#1
My husband has been diagnosed with PD 18 months ago. So far I feel that I have beenvery strong phisically and done lots of jobs that I would never think possible. But I have suddenly realised that I am not so strong mentally and I am feeling that I am going through a slow bereavement. I dream every night of the way things used to be and am feeling very low in the morning and just dont want to get out of bed. I think that my husband is now coping with PD more than me and I know that I can't just let go. Please has anyone got any advice. Thank you.

#2
Hi Evesmith
I do understand how low you feel.
My husband has had Parkinson's for 11 years and we have had some terrible times.
Life has been a constant readjustment to change and I have to take on more and more of the tasks we once shared.
As you say, we grieve for the life we thought we would have and that is now lost.
I have counselling which helps enormously.
I can be totally honest about my feelings in a way that is not possible with those close to us.
I am learning to stop myself going down the What if?" track when I imagine the future and fill my head with fear and dread.
Could you ask the GP to refer you for counselling?
I understand that the NHS will offer 6 sessions and extend it if necessary.
You need to be honest about how you are feeling and ask for help.
It is there.
Take care of yourself.
Goldengirl

#3
Please go and have counselling. My husband had counselling when I was first diagnosed. Our partners have to do with a great deal of anger and almost a kind of bereavement as you so well put it. The trouble is that they feel unable to make a song and dance about this because their other half is really poorly. This is a load of dot dot dot dot dot. In our experience, the carer/other half has just as much a right to be listened to as we do sometimes more so.
Get yourself a councillor.

#4
Hi,
Each partner of a PWP is different.My Wife is the tell me to get on with it,take all the medication you can to control the symptoms type category.The don,t come complaining to me category.The,why did you brake so hard or late in the car category.The"oh hurry up",when I can,t get my key in the door variety,the not interested one iota in Parkinsons variety.Parkinson's is more of an inconvenience to her than me variety.
Try getting by with PD,it,s no stroll in the park.I,amongst other probs including pd,have been having not just six,but weekly counselling sessions since the beginning of February this year.Yet my Neurologist does not take this into consideration when withdrawing my Mirapexin medication.People with Parkinsons do suffer and for those whose partner's care,lucky you.
Take care
Titan
P.S,in our local area,all help and assistance is geared towards the carers,trips,manicures,all sorts,nothing for the PWP.I myself care for myself,now unmedicated,and bitter about it ,doing everything round the house,Wife goes out to work and goes to bed.I care for myself.The day I can,t care for myself,my Wife won,t care for me,so i won,t be here,I will see to that.Down,well,how down can a person go.

#5
Hi,
It seems to me that you have become depressed. Maybe you need a weekend away because sometimes a change of scenery can help. You could go away with a friend as opposed to your husband. This is not a cure for you and your feelings but it might help in the short term and also when all else fails maybe your GP can prescribe you a mild anti depressent to help you deal with the problem at present.
Your husband is the one who is dealing with this disease and I know you wish it could be like it was but unfortunately until a cure is found then this is the way it is.
I have PD and believe me we can all put a brave face on it and say that we are coping well but deep down we would all like to be "NORMAL"
I dont mean to sound cruel but and I know you are saying "what about me" but also what about your husband! It is a very difficult time for both of you and I have always found that talking about it helps, spend some time with your husband and tell him how you feel at present and let him tell you how he is feeling.
PD is a cruel disease but if you try and help yourselves then it wiil not ruin your lives. :stuck_out_tongue::stuck_out_tongue:

#6
Hi titan my other half is a bit like yours .i know i have to persavere to my limits but sometimes enough is enough and i just need help. Take care chris

#7
Hi /...My husband is the one who is diagnosed with having Parkinsons .

WE have been married for 53 years - We have a daughter -My attitude is that " WE HAVE PARKINSONS " He didn't ask if he could have it, neither did I.

I can't tell you it is easy for me in fact it's not .. But surely not as hard as for him, on tp of it he has to sit back and watch as I struggle to support him.

I do my best to keep his spirit up because after all it's

WE WHO HAVE PARKINSONS ........

#8
Hi /...My husband is the one who is diagnosed with having Parkinsons .

WE have been married for 53 years - We have a daughter -My attitude is that " WE HAVE PARKINSONS " He didn't ask if he could have it, neither did I.

I can't tell you it is easy for me in fact it's not .. But surely not as hard as for him, on tp of it he has to sit back and watch as I struggle to support him.

I do my best to keep his spirit up because after all it's

WE WHO HAVE PARKINSONS ........

I suppose you might call it love . I am honest with him and tell him the difficulties I have as well Without my laptop I think I would feel more isolated but being able be in touch and make new friends with other sufferers/ carers I feel less isolated .

#9
Hi Evesmith
You may find it helpful to read the following book.
'The Selfish Pig's Guide to Caring' - How to cope with the emotional and practical aspects of caring for someone. by Hugh Marriot. I found it easy to read and very helpful.
I also found it helpful to read up about Parkinsons Disease so that I had a better understanding of the illness.
Id recommend 'Parkinsons Disease for Dummies' and also 'The Daily Telegraph Guide to Parkinsons Disease'.
Personally im not a great lover of counselling (although i have had it in the past). Id recommend you take a look at mindfulness based cognitive therapy - MBCT - it differs from counselling in that it doesnt dwell on the past but helps you to learn how to appreciate the present and not think too deeply about the future.
Hope this helps
Carrot

#10
Whatever you do, keep talking.

#11
Hello evesmith, my partner also got diagnosed 18months ago, and I thought I was so strong and could deal with it, but I hit such a low and feel exactly the same way as you described, felt like what's the point it will only get worse and how can talking to someone help they cant make it go away, but I was wrong, I got so much strength reading the stories on here and reading the lovely replies from the people here,it made me realise that to have the support of talking to people that have been where we are now can help. x

#12
I care for my father who has PD.
I could not cope with-out coucelling!!!
If you live in a London borough there will be a carers centre/I do not know about shires?
The carers centres provide councelling free of charge.I receive councelling through Wandsworth Carers Centre,it is free and has no limits/sometimes I go and just cry to release my frustrations/emotions and on others I go and talk and ask questions/advice on stress/feelings/situations and feel I can say what I like with-out any comebacks.
It definately works - I also tell every-one who knows me I have coucelling - it is nothing to be ashamed of.
I ask advice on reeding material - anything really.
It did take a time to get used to it.
The coucelling is open-ended so if I do not want to go one week I phone and cancel the appointment.
The carers centre also give advice on a whole range of stuff!!
I have learnt manual handling techniques/first-aid
Had a bit of osteopathy/relaxation techniques/benefits advice,the list is endless and it has all been free!!!!!!
The centre in Wandsworth is open 5 days a week/they also have a centre in Balham which I have been to once.
Google carers centres-if you live in London each borough has a carers centre - they will all provide something different-you also meet other carers who care for somebody with different needs.