Best way to support parents


#1

My father was diagnosed with Parkinson's in January 2013; he is 63 years old and lives with my mother. After he was diagnosed he was initiated on levodopa treatment but we quickly found that the medication exacerbated his symptoms, with his neurologist subsequently deciding to cease pharmacological treatment and explore other avenues. Since then he has been undergoing regular physiotherapy and attending various exercise classes which have had some positive effect. Nonetheless, his motor symptoms have continued to worsen and he is now confined to the house and requires assistance with a number of basic self-care tasks (dressing, eating etc).

While my mother is his primary care-giver, I've tried to make adjustments to my own situation so that I can provide more support. At the time of his diagnosis, I was a 18 months into a graduate position, but decided to leave and begin a PhD programme in November last year. I was hoping that being a student would afford me greater flexibility to spend time with my family (who live about five hours away from where I am currently based). However, the programme has been more difficult than I had thought and as a result I have actually found it more problematic to make it home to provide assistance. In recent months I've found myself becoming very down about the whole situation, although I appreciate this is nothing compared to what my dad and mum are going through.

What I'm having the most issue with is the nagging voice at the back of my head which keeps asking whether I should be doing more. I've tried to put myself in a position where I can help without sacrificing everything I have worked for in my career and personal life, but in reality it feels like my decisions up to this point have worsened things in all areas of my life. I'd really appreciate any advice or insight into what to do moving forwards.

Many thanks


#2

Hi Krowler

I'm very sorry to hear about your Dad. And also sorry to hear about you. You seem like a very caring child, with a strong conscience, and I'm sure your parents think a lot of you and are comforted by what you are able to do.

There's nothing like hindsight. It makes us wiser, and it mucks us up. And if you're already feeling guilty it gives us a nice big stick to beat ourselves with. There's really no right or wrong amount of support you can give your parents, or right or wrong amount of sacrifice you have to bear. Or right or wrong amount of guilt you should feel. This of course makes those of us who feel we should sacrifice more carte blanche to feel even more guilty. My partner and I look after an 87-year-old, and I always say we can only do what we can do (but only sometimes do I believe myself).

Are you on your own? Do you have family responsibilities yourself (partner, children)? What would you sacrifice by being closer to your parents? - but more importantly, what would they gain? Do you have siblings, and if so are they taking their share or do you feel you have to carry the burden yourself?

Practical stuff. Talk to your local Family Carers person: they can help you practically and emotionally. I wonder if your Dad now could be/should be on meds of some sort? Plenty here will tell you that it takes some time to find the right ones. Does your Dad have a Parkinson's nurse? (more practical, more accessible than the neuro) How is your mother coping? Does she need help? I'm thinking that if te pair of them can get stable and comfortable on local resources, it'll mean your visits can be more supportive.

Does this help? Feel free to ignore it all. It's not advice - what do I know? - it's just some thoughts. But don't let that voice in your head beat you up, otherwise you'll be no good to anyone.

Take care. Let us know how you get on.

Semele


#3

Hello Krowler, Welcome to the forum.  Semele is right.  We can only do what we can do and we mustn`t feel guilty if we can`t do more.

I can talk from the other side of the view.  I`m 72 and the carer for my husband.  I have talked to both my daughter and my son about the support they can give.  I am coping with the help of this forum and advice from OT`s and physios.  The support I really need from our children is emotional.  They phone often and hearing about their day is a great uplift.  They are happy to chat if that is what I need and to discuss how we can sort current difficulties.  It is good to hear that they think I am coping well.  They also send frequent e-mails with pictures.  It`s lovely to get them.  My OH has a very poor memory now so I print out the e-mails and he can re-read them as often as he wants.

If your parents are anything like us they won`t won`t want you to sacrifice any part of your life.  Live it to the full and let them share in your interests via phone calls and e-mails when you can`t visit.

Take care

Hatknitter


#4

Hi Both,

Thank you so much for your replies. I can't you how helpful hearing your experiences and getting some advice is.

My dad has actually just started on a new treatment so fingers crossed it provides some benefit, although my mum is often the one I worry most about. She has to do so much and I'm amazed my her strength, but she does have her down days. I try and tell her as much as possible how well I think she is coping and to be there to talk when she needs to.

I don't have any responsibilities other than my academic and work ones. I think the question about what would they gain if I did move home is a really important one, thinking about it over the weekend I'm not sure that would even make things any better! It's really great to hear how the photos help, I'm going to make sure I do that and try and keep things happy. I'm also going to see if there is any way we can get her some more support day to day as suggested and see if that helps. 

Thank you so much again.

Krowler

 


#5

Hi Krowler i have been trying to reply to your post but kept getting logged out!  I am a 63 year old parent with Parkinsons.  Two of my daughters are currently undertaking study for phds, one living near us and one quite a distance away.  it is very hard work and there is very little time to spare so I know how hard it is for you to get to visit.  However I wanted to say that as a parent I would hate it if my children gave up what they were doing to move closer, that would be a terrible responsibility for me to know that they had given up their friends and ambitions on my behalf.  We get a lot of pleasure from knowing that they are getting on with their life and we enjoy the facetiming/skype plus phone calls as well as the visits.  There may be a time when we might need some practical help but it doesn't necessarily mean it has to come from them although they may be involved in organising it.  When you have finished studying you might find opportunities to move nearer but it should be for your benefit as well.  I know my diagnosis affected all three of my children and suddenly they had to think that life will change but from my point of view life goes on but differently.  I do hope your dad gets the medical and psychological help he needs and your mum is able to access the support she needs.  Don't forget we love to hear all about what are children are up to and that they are happy.


#6

Hi Krowler,

Sending all my best wishes to you and your family. It is so hard being far away, your words ring true for me. It sounds as though your dad needs a lot more further exploratory tests to get a diagnosis. My mum has Parkinson's and was diagnosed at a similiar age to your dad experiencing problems. She has been living with it for nearly 5 years and is doing well. It has taken me time to get used to the ups and downs of the illness and seeing my mum peak and trough in her symptoms. She lives on her own and when her meds need adjusting it can see her go through bad patches.

However these are always temporary changes and she stablises again.

Living in Edinburgh and being far away from my mum is so hard and you feel so much guilt every day. My brother is close to her and I am continually concerned how much he is taking the burden of support. I would love to help her more but I know that if we moved closer my family would not have the life I had hoped and worked hard for. I can't see myself getting work closer to home in the creative and charitable fields that I work.

I have to agree with the above comments, even though my mum would love us to be nearby and would love to see her grandson more often, she would hate it if we moved back for the wrong reasons and particularly if this affected negatively our situation. Your mum and dad will want to see you do well and enjoy your life, they have each other.

I also find that I can be as much support far away. Finding those ways that I can help has been really good for me in not feeling completely helpless. I have just helped my mum get a hip replacement that she needs in weeks rather than months (I used to work in healthcare and understand a bit about how the system works) which I feel has helped my mum much more in getting the treatment she needs quickly.

Good luck with your studies. It won't make your dad feel any better if you give it up.

All the best

Clur


#7

Hello. I am new on here. I have been reading some posts and I feel for u all. My mother has Parkinson's diagnosed 5 years ago. Also a degenerative spine so very immobile. My dad struggles himself and in and out of hospital and struggling to cope as her primary carer. Mum is at present in hospital as she contracted pnemonia. Now once discharged she needs double handed care. At present we are in the start of relocating them to the north west close to myself as they live in Kent. A lovely retirement village with all care on site. I am currently off sick from work with all this and can't decide to finish work to help care for them or not. So much going on in my mind. It so upsets me seeing mum like this as she was so I dependant as was my father. I just don't know what to do. 


#8

Hi Maxwell

I`m carer for my husband and over the years it has taken over more of my life so that it is not easy to step back and see the whole situation.  Fortunately our children are nearby and can offer advice and their opinion.  It would be a pity if you gave up your job and so lost the ability to see the whole picture.  It would certainly lessen your ability to put pressure on the care agencies to provide the care and support that your parents are entitled to.

We enjoy our family`s visits and we can swop news over a cup of tea.  If you are the main carer for your parents they would miss that because your life would be so caught up with theirs that `news` would be in short supply.

Perhaps you could visit more often, take  a day off work to spend with them or to do the little jobs that build up because they are too small for a tradesman to be interested.

If your parents are like us they would be sad if you gave up your life to support theirs and be happy if you could make fairly frequent space for them in your life.

Best wishes to you all, I hope you find the balance that suits you all.

Hatknitter


#9

A(nother) parents view - mine - in that I am horrified at the thought of my children giving up their hopes and dreams, even in the slightest, to be my carer, however part time.

Come the day I am totally incapacitated, should it happen, there are just some things a child should never have to do for a parent, and I will make it as clear to them as I can that my expectations of them are totally absent, nil, nada, zilch when the time comes. However upsetting this may be for them to hear, it would simply break my heart to have them give up so much on my behalf, totally regardless of how willingly they may choose to do it.

Communication is key here, as I'm sure, much like our condition, we're all different, and you need to find what works for you, within the context of your respective comfort zones, allowing the patient an/every opportunity to express their wishes (without getting upset if it turns out to be a polite rebuke.)