Isolation from Out on a Limb

Living with Parkinson's Carers, friends and family
1

Hello Forum members,

 

I have been caring for my husband for 14 years with Parkinsons and the past six years have been the challenge due to other health issues unrelated to his Parkinsons.  I often feel isolated as I am his sole carer.  My family live a long way away and I have some good friends but I can't ask them to sit with my husband as they would not want to help with his toilet requirements and personal things I have to do.  They will sit in for a couple of hours occasionally but I cannot leave my husband alone.  On a good day I can leave him for an hour or two at most, on a bad day never.  Does anyone else feel alone and frightened of all the responsibilites of caring, running a house, sorting out tax, bills car?  I always manage to do it and the past few years has changed me into a stronger person but I only show the outside world the smiley face and close friends a few tears but nobody really knows the "real me" when we are having a bad time.  I have "lost" my husband bit by bit mentally and physically so I cannot share the things I used to with him as he does not understand. Some friends of his have distanced themselves from him which is upsetting for me. I think they don't know what to say or do.  The friends who have stayed true are pure gold.  The reason I joined the Forum was to chat to others who may be feeling the same.  Some days are good and others bad but when something goes wrong in the house or with the car etc. I seem to be in tears instantly.  I feel I live on the edge most of the time.  Sorry to get it off my chest but does anyone else feel like this?  I sometimes feel guilty too in that I get exasperated with my husband (well his condition is the reason) but I am only human and do the best I can.  Thanks for listening.

2

Hi 'out on a limb'.  I can totally relate with your situation, as my mum too went through a lot of the same things with my dad, who was diagnosed with PD in his early 40's and remained so for 24 years, although now sadly no longer with us, (6mths gone.

I live close by my mum and even then with the two of us to hand it felt like a struggle on days as you've so rightly pointed out some days you can manage to get out and others not on the bad days, I sincerely understand where you are coming from. Sometimes there would even be bad weeks for dad, and mum would be pulling her hair out with just trying to cope with him and his varying needs.

It certainly does take a lot out of the primary carer and their needs often tend to go overlooked or understated yet to there loved ones they are there 'guardian angels' and rightly so.

My brothers one of which is local to my mum, the other about an hours drive away tended to keep a back seat approach for a lot of the time also until his final month, so we also felt very much out on our own with it all.

Your comments about bills etc, also rang true and is something mum has had to adjust to doing as well on her own now, as dad used to do it all, literally! even with my helping her where I can, it still confuses the pants off us both!

I am not sure as to what extent or symptoms your husband is currently at with the PD, though with my dad, he suffered more with the freezing episodes when walking (apologies, it does have it's name but at the minute my mind is drawing a blank at that one), swallowing problems where he basically had to have everything blended down or extremely soft lump form, and tremors.  Yet until his last 2mths he was very much still the intelligent, articulate man he always was. So he became more or less a prisoner in his own body, one that he could always think in, but that failed him in so many others.

Your "brave face" comment also pulls on my own heart strings too, as that is exactly what I felt I had to do when visiting them both, yet inside all I wanted to do was scream at how unfair this all was.

I felt I had to respond to your posting as I can feel your own torment as if it were the same as my own and my mums, and want to encourage you in saying you are only doing I'm sure your very best for your husband and he will know that, and I'm sure very much appreciates it. It oozes from your very words above.  It is extremely tough and I hope you are in contact with a local PD nurse for your area as they proved an invaluable source of support and advice for our own family.

Please know that I myself will be here to chat too if you need (or that I can help, or support you) in any which way I can.

I send you much strength and best wishes

x

 

3

Hi 'out on a limb'.  I can totally relate with your situation, as my mum too went through a lot of the same things with my dad, who was diagnosed with PD in his early 40's and remained so for 24 years, although now sadly no longer with us, (6mths gone.

I live close by my mum and even then with the two of us to hand it felt like a struggle on days as you've so rightly pointed out some days you can manage to get out and others not on the bad days, I sincerely understand where you are coming from. Sometimes there would even be bad weeks for dad, and mum would be pulling her hair out with just trying to cope with him and his varying needs.

It certainly does take a lot out of the primary carer and their needs often tend to go overlooked or understated yet to there loved ones they are there 'guardian angels' and rightly so.

My brothers one of which is local to my mum, the other about an hours drive away tended to keep a back seat approach for a lot of the time also until his final month, so we also felt very much out on our own with it all.

Your comments about bills etc, also rang true and is something mum has had to adjust to doing as well on her own now, as dad used to do it all, literally! even with my helping her where I can, it still confuses the pants off us both!

I am not sure as to what extent or symptoms your husband is currently at with the PD, though with my dad, he suffered more with the freezing episodes when walking (apologies, it does have it's name but at the minute my mind is drawing a blank at that one), swallowing problems where he basically had to have everything blended down or extremely soft lump form, and tremors.  Yet until his last 2mths he was very much still the intelligent, articulate man he always was. So he became more or less a prisoner in his own body, one that he could always think in, but that failed him in so many others.

Your "brave face" comment also pulls on my own heart strings too, as that is exactly what I felt I had to do when visiting them both, yet inside all I wanted to do was scream at how unfair this all was.

I felt I had to respond to your posting as I can feel your own torment as if it were the same as my own and my mums, and want to encourage you in saying you are only doing I'm sure your very best for your husband and he will know that, and I'm sure very much appreciates it. It oozes from your very words above.  It is extremely tough and I hope you are in contact with a local PD nurse for your area as they proved an invaluable source of support and advice for our own family.

Please know that I myself will be here to chat too if you need (or that I can help, or support you) in any which way I can.

I send you much strength and best wishes

x

 

4

Hi, I am sorry to learn of how you are feeling but can understand the pressure it can put on yourself and the relationship you once had with your husband. 

I am in a slightly different place from yourself in that my husband was only diagnosed in Jan this year.  Even though he also suffers with cervical dystonia that he has now had for nearly 3 years.

I also get irritated at times particularly with how he struggles with his speech, I am forever asking him to repeat himself.  I know it is not his fault but conversation just does not flow in the same way. 

PinkPrincess I found what you said particularly interesting about your mum, as my oh pwp is only 41 and myself 33.  We have 3 young children under 5.  And I work full time.  I wonder how your mum found it in the early days with the PD as I am finding it harder to stand by my husband and feel awful in feeling this way. 

 

Life does like to challenge us, x

5

Hi Baker Girl

Has your husband been referred to a Speech Therapist?

He can be seen either on the NHS or privately (search helpwithtalking.com).

The NICE recommended therapy is LSVT, a 4 week intensive therapy programme.

Speech therapy for people with Parkinson's  has the best outcomes when started early. I can see that your husband is young and is probably working. This therapy could help keep him at work longer. It helps speech, voice, facial expression, saliva management and can improve swallowing.

Have a look at my website for more information. I'd be happy to help you find a local therapist.

6

Hello , you are indeed out on a limb, I fully understand and sympathise with your predicament,but there is no easy answers, as time goes on it becomes a challenge ,the deterioration in your husbands health will sometimes batter you, then will come a easing of the severity and you will catch up and beat this vile disease new drugs and treatments are coming and breakthrough in the fight against PD is surely not far away, I am speaking as a victim not as a carer and I watch my dear wife go through all the horrible things you endure , when I tell her how much I love her and how I appreciate all she does for me, she just smiles and says to me "in sickness and in health" now I know its not as simple as that and the living nightmare that is PD makes thinking positively almost impossible at times but you must not allow it to break your spirit , caring for your husband is a long hard road which you must travel together but you can do it, be strong and seek out every  option to receive help ,and dont feel guilty if you are granted some form of respite , take it and have time to yourself ,it will refresh and renew your spirit, believe me it works I  am sure your husband would be so pleased for you

                                    Wishing you well    Kindest Regards     Fed

7

Thank you South Bristol Voice Therapist. - I took the detail you suggested about LSVT course.  And today OH had a meeting with his speech therapist.  He mentioned it and she has agreed to get him on the course.  I am so pleased.  It seems like it will be a really positive thing to do from what we have read.  So thank you again for your advise.

Also thank you Fed for your comments.  I think that sometimes I am almost scared more of what is to come than what we are going through now.  When you say to take all options to get help, is it normal for OH's of PWP to get help through counselling?  I just feel my emotions are all over the place at times and although I love my husband and he is also my best friend I can't talk to him about all that I feel.

All the best Baker Girl

8

Hi Baker Girl

i'm not a carer, I'm the PwP. And my symptoms are much milder than your OH's seem to be. And yet I can see what you're going through. I think, just like PD, every carer is different in what they can manage, what help they need in managing it, when they have to say enough. What you can't do is feel guilty about where you have to draw the lines. Just like PD, you both have to accept it.

I keep suggesting to my OH that we have a pact - that we agree in advance I expect her not to do more than she can. That in supporting my independence she doesn't lose her own. That she's not allowed to feel guilty. That she takes all the help she needs, and that'll be "normal" for her. That i will do my best to help her help me.That we shall still love each other whatever. And lots of things I haven't thought about yet.

S

9

Baker Girl, you are more than welcome :0)

Be prepared for LSVT to be hard work. It requires therapy for 16/30 days and homework for every day of the month. It is easiest to think of it as an exercise programme.

Good luck 

10

Thank you PinkPrincess74, Fedexlike and Baker Girl.  The fact that you have read my post and responded so kindly has made me feel better.  PinkPrincess I am so sorry for the loss of your dad and all the worries that come with it.  It sounds like you are an amazing person who has been there for your mum and him.  Well done.  It is reassuring to know I am not the only one who struggles with household problems.  I sometimes think people think it is silly but it is very real when you have a problem and you have no idea how to resolve it at the time.  My husband struggles with his speech, mobility, but mostly with dementia which is getting worse.  There is not one sentence that makes sense although I am finding out bit by bit what I think he means.  I do feel scared for the future but have accepted what will be will be. Thank you for your support and hope things look up for you. Your kindness is much appreciated and I feel less alone.  Bless you.  

Thank you also Fedexlike and Baker Girl for your kindness. Fedexlike you sound a strong person and it is good to hear it from the "other side" as a victim as you say. That is exactly it isn't it?  No one asks for this disease and it must be hard to cope with on many levels but I know my husband is quite pragmatic and says "Oh it is what it is".  I know he gets frustrated that he cannot make himself understood and forgets what he is going to say.  He needs a one to one conversation in short sentences but unfortunately most people don't get it (and why should they? No blame attached to them) so he gets ignored because it is easier for them to do that.  I do understand but I feel battered and hurt for my dear husband.  Fortunately he seems unaware most of the time that they do it but it is hardly helpful.  Sometimes I try and lock Parkinsons away in a cupboard and think of my husband without it which lessens the frustration that is human nature to feel.  It is a two way journey for the "victim" and the carer but as long as we do our best that it all we can expect of ourselves.  Good luck with your journey.  Thank you all you lovely people.