Becoming a carer


#1

Hi to anyone out there who might come across this…(my first post)
I have very recently become my husband’s carer following a fall at end of June in which he broke his hip. He came out of hospital/rehab on Wednesday and continues to need much more care than I had expected or planned for. He is a lot older than me, though we have been married for 26 years. We have two sons in their early twenties who help if and when they can.
I am really wanting to connect with other people in a similar situation - not for tea and sympathy but for the chance to sound off to people who understand, to see if there is advice/experience that I could use etc. Good old Parky has been in our lives for best part of about 8 years - a most unwelcome guest…in both physical and mental ways.
It is of course worst for my husband (David) , but not great for the rest of us and I am somewhat dismayed to find that my tolerance and patience levels are not very high…I know that there are non easy answers and we have to make the best of things, are luckier than so many etc etc, but…It feel like quite a lonely journey to be on - especially with the increasing loss of the person that I knew David to be before all this happened.
We are now thinking of moving house to somewhere that is more accessible in terms of downstair facilities since our home is not really adaptable at a cost that makes sense…not sure how I will manage that but people do so presumably I will…

Enough for now - having started I feel I could go on for ages but no one would read that much!


#2

Hi Pippa,

You can find lots of useful information and advice on the ‘Caring for someone with Parkinson’s’ page on our website, here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons.

You can also reach out to our Helpline team if you’d rather talk with us directly. You can call free on 0808 800 0303, Monday-Friday from 9am-7pm, and Saturday from 10am-2pm.

I hope this helps.

Best wishes,

Owen,
Moderation team.


#3

Hi Pippa. I wouldn’t mind connecting with someone else needing to sound off! My partner, Les, is 12 years older than me and was diagnosed six years ago. He’s retired, I’ve got quite a tough job which is going to get tougher and I really want to manage it all, but sometimes I feel like screaming! It’s really lonely isn’t it? Feel free to carry on ranting!
Caron


#4

Thanks Caron, good to hear back from you . Thanks for replying .
Have come to the end of a long day and feel like I have achieved nothing but kept my head above water and coping with my husband’s very changeable moods and almost constant needs and trying to be available to my sons. It is so difficult adjusting to such changed circumstances and feel my life shrinking to these four walls and the rest of the world drifting away .
I think I am still in some kind of denial, or dream, as if I will wake up and things will be back to normal , which of course it won’t. But then there’s the uncertainty as to what is going to happen and when…all of which is unknown and so impossible to plan for in any realistic way.
Am also working but trying to reduce my hours. Am not sure I am In a fit state mentally to do it . I don’t think that there are any easy answers but feel like a rather pathetic lightweight in not being able to deal with this all a lot better. Time to grow up I guess!
I know the theory…acceptance, gratitude, taking one day at a time, not expecting too much, taking care of oneself too ( err, how? When? ) but puttting it all into practice under these circumstances is very much more difficult than it sounds.
There is definitely comfort to be had in knowing that there’s are others out there facing similar challenges, though it is a matter for regret that anyone has to.


#5

Hi Pippa. Tough day. How old are your kids? I’m trying to find some local support at the moment, not just for Les, more for me! Trouble is most seem to be during day and I work full time too. Was debating some counselling, but think might be best to talk to someone who knows a bit about this… I keep finding myself being cross with the whole ‘this too shall pass’ philosophy, because, actually it bloody won’t! Not without a lot of heartache anyway.

What’s your daily routine? Exercise keeps Les busy and makes him feel more positive. We’re still trying to work out the rest, but he’s pretty low right now, so we do need a bit more help.

Can you feasibly give up work? Do you find it does actually offer you some respite and a space just to be you? What do you do for you? I know that’s easier said than done but try little things like 20min with your book and a coffee, a phone chat to someone who can listen or watching trash TV for half hour!

Like you, there’s so much I just don’t know now about my own future, let alone his. No timescale, no precedence, no certainties, and that I find very difficult. I don’t know if I am strong enough. I’m getting through one day at a time too. So at least we know there’s more of us doing just that. One hour, one day, one positive moment xx


#6

Bet my day was worse than yours! though have to look on the bright side, cos I could be arranging a funeral rather than feeling ever more frustrated at David’s inability to assess his own abilities . Was at work , carer here but 21 yr old son took David upstairs at david’s insistence and he promptly back somersaulted down them. How he managed that and survived with little more than minor bruising is anyone’s guess.
Am finding the relentless demands and the absence of proper communication with him really difficult and v draining.
Son number 1 is 24, living at home whilst he tries to set up a business whilst training and eating as a body builder…all v time and energy consuming. .he is finding his dad’s condition v v difficult and resents the demands it makes, or could make on him, and guilty for feeling that way but thinks his dad has brought much of this on himself, not the PD of course , but the deterioration caused by the falls which were avoidable. Son number 2 goes back to Uni shortly so has that escape to look forward to.

I find work is a good distraction but also v demanding ( child and adolescent mental health) with never enough time to do all that is necessary which then creates more stress, as do my colleagues. God I do moan don’t I ? I .fantasise about desert island life a la “Dirt Music”by Tim Winton, or “ Is this it “ by Lionel Shriver (not sure if that is the exact title).
So, yes, I read and couldn’t survive without it. Am an introvert if the truth be known (Susan Cain “ Quiet” and “Introvert Doodles” by Marzi) , which probably helps under present circumstances though find myself over withdrawing cos can’t face having to make the effort required to be sociable right now. Not that I have time anyway , though I know I must make it somehow.
Counselling could be good but likely expensive . Do you have a carers support service? My local one exists but for very little purpose, except I did meet one of the staff and she was lovely so might try and get to see her again, though I didn’t get the impression that that is her role exactly. It feels very disloyal and rather pathetic to sound off to friends so I don’t …maybe I should , but I need understanding not sympathy. Hard to describe the sense of loss that is involved and the sense that a relationship that used to be one of give and take on both sides has become one of give by one side and receive by the other. And both of us feeling helpless and trapped in our own ways.
I do sometimes wonder whether I haven’t had it too easy for too long and that is why I’m finding this so hard, or maybe it just is hard and that is the bald fact of the matter however much one ( or others) try to sugar coat it.
Time to get some sleep…now that David has a phone within reach , he can and does call me during the night. It didn’t take long to realise why sleep deprivation is used as a form of torture!

Warm regards, Pippa


#7

Hi Pippa

My circumstances are different ,but similar in one way - frustration. I am the one with PD, diagnosed earlier this year, (I also have chronic arthritis) and my husband is brilliant at caring for me, although I don’t need much physical help. However he is 91 (I am 83) and he is quite deaf. I get so frustrated at having to say things several times and I get the feeling that he is not interested in anything I might have to say. The situation is not likely to improve. He has some good hearing aids, but doesn’t always wear them.
As you say, not sure how we will manage, but there is no alternative - we just have to get on with it.

Good luck to you both.

Knine

Audrey


#8

Similar, only we’ve just started this journey…
Can I ask where you are?
Sending you hugs and all good wishes.
Sally


#9

Hi Pippa. Our situation. Is much like yours. I am 77 and my husband’s carer. He is 81. Diagnosed in March 2012. The first 4 yrs were ok. Since he could no longer drive in 2016, things are much more difficult. He has an indwelling catheter and just out of hospital having been treated for a urinary infection, this is the third time he has been in hospital for this. He is much more limited in every way, especially as he also has dementia.
My life has changed completely and I struggle at times. Went to dr and now take anti depressants. Also had CBT which was helpful to calm me down when I feel totally frustrated and have run out of patience. We are in a very good local authority with wonderful support services for Carers. Try everything you are offered. Following his discharge from hosp we have been given the help of Carers coming in twice a day. (Free in Scotland). Thought Inwould hate this but no I have been proved wrong, it is good. Talking to others is very helpful eg this site. I wish you all the best. You are not alone, yes it is hard for both os us . Carnation


#10

Just wanted to say I hope everything goes ok for you Knine. We all have difficult situations - and Pippa has clearly got big challenge ahead - but it sounds like you’ve got a lot on your plate as well. I’m just starting to understand what it means to care for someone who has Parkinson’s.

My mother (86) was diagnosed a couple of years ago, but the medication kept the symptoms under control up until a few months back when extreme fatigue, along with the anxiety and depression, started to take hold. And then mum started fainting when she stood up. She’s just had a spell in hospital and ended up fainting regularly on the ward, even when she was sitting down. That was when we realised we had to be more proactive in understanding the illness and pushing the medics, because it took them weeks to figure out she needed to come off the beta blockers.

So now I’m reading up and joining the forums! She is seeing her specialist on Saturday and we are hoping he can adjust her meds to improve her energy levels and reduce the risk of fainting. I have cared for her 24/7 since last Thursday when she left hospital, but that’s not a long term solution as I live in Yorkshire with my family. Fortunately my sister lives a few doors down from my mum, but she can’t do 24/7 care. Social services are providing ‘re-enablement’ support for 6 weeks, and then we will have to figure out what to do.

Colin


#11

Hi Sal4646

I live in a small town called Wirkswlorth, near Matlock in the Derbyshire Dales UK. Where are you?

Audrey


#12

Thanks Colin for your good wishes. I am actually doing very well at the moment, and really feel for those who are struggling with family difficulties. Fortunately we have sufficient help and family support to keep us going at the moment. Long may it continue.

Best wishes
Audrey


#13

Hi Audrey
I’m in Westbury, Wiltshire.
My husband, Keith who is 71 had been diagnosed for about a year although he has had symptoms for several years.
I’m doubly unblessed as my younger sister has also been suffering since 2012 and is so much further down this hellish road. Nightmare …


#14

Hi Audrey,
My husband is the PD sufferer.He was diagnoised 2 yrs ago but had symptoms for at least 5 years previously. He us 61 and I am 62…we live in Trowbridge so not far from you both.Do you go to any of the PD groups in the area?Also how do you find the support from PD nurses/consultants in the area?
Would love to hear your views…
Denise


#15

Hi Sal4646

One family member with PD is enough - to have two is more than enough. It seems that many people are not diagnosed until they have had PD for some time. My neurologist said I had probably had it for about 5 years. However, since I am now 83, I am just trying to make the most of every day.
I hope you are getting the support you all need in his situation.
Best wishes

Audrey


#16

Hi Pippa
My Husband is 76, 12 years older than me. He was diagnosed in 2012 and like many others on the forum had been having symptoms for a good 5-7 years prior.
The loss I feel of him sometimes quite overwhelms me as we have been a couple for 41 years, I sorely miss my supportive reliable loving husband. I think the change reeked by Parkinson’s both physically and mentally, coupled with the side effects of drugs, obsessive behaviours etc, robs the person of their identity and makes it harder for the carer to care. As my husband’s carer I feel guilty that I find his needs irritating and annoying, I’m constantly having to remind myself that the man I love is in there somewhere.
My husband has been stable on medication for the majority of the last 6 years until May this year when he was rushed into hospital with a blood infection. Since then he has been in and out of hospital both scheduled and emergency whilst the docs use different antibiotics to try to stop the infection. The affect on his Parkinson’s has been marked, he hardly sleeps, his legs cramp painfully especially at night when he is trying to sleep (if he isn’t obsessively watching TV & eating) he falls out of bed and has falls. His mental state fluctuates between despair and depression to irritability and confusion. He communicates less and less andcwhen he does speak it’s hard to hear him.
I have had to take 3 months off from work as I also care (part-time) for my 89 year old parents, plus look after our grandchild one day a week. Something had to give and it felt like it was my sanity.
I sometimes feel like I am grieving for my husband and the life we had.
I understand too your need to withdraw socially, it takes too much effort to go out and talk.
On an ‘up’ note hips mend so let’s hope with mending underway your husband’s demands might become lesser on you.
As someone else said grab any help that is offered to you. Best Wishes Jane


#17

Hi Babesbrown

I don’t visit any groups at all, but I did sign up for an online self-management course which I found very useful.When I was diagnosed I knew nothing about PD, and had never met anybody with it. The course opened my mind, and helped me to decided how to manage my life in future. I went down the private route to get a diagnosis as there was a very long waiting list on the NHS. I did some research and chose a neurologist who I saw within a week. He did some preliminary tests that day and said he thought i had PD, but suggested that a Datscan was the way to find out for sure. I wanted to know the answer and therefore agreed. The result was positive - moderate Parkinsons. I was immediately put on Sinemet plus and within a couple of weeks my left hand tremor had disappeared. This was in January this year. I saw him again in March and am seeing him next Monday. I am now 83 and still enjoying life to the full.
I also have chronic arthritis and that seems to cause me more problems than the Parkinsons. Having gone down this route I have no need for a PD nurse. The neurologist told me to contact him if I had any problems. Together with my GP they take care of everything (so far at least) In fact nothing seems to have changed in my life at all.
I know I am lucky in that we could afford to go down this route, and I am very thankful.

When I read of the difficulties which some PD people are going through it makes me want to help. I am getting involved in research and will do everything possible which may help to find a cure for this awful disease.

It seems that support varies from area to area, and I think you have to shout louder if you do not get the support you need.

I send you my very best wishes, and hope you are able to access some helpful support.

Yours

Audrey


#18

41 years! that is impressive! I beet people didn’t think you would stay together , let alone for so long, when you first got together, given the age gap…? Jane, you put it so well and what you say resonates so much with my experience. I guess it is the love we have for our other halves, established over so many years (in our case only 26, though David is 73 and a mere 18 years older than me) that means that caring for them in their very diminished state seems to be the natural choice - not that there are any easily affordable alternatives!
David continues to fall, almost daily, despite supervision, due to what can best be described, depending on one’s point of view, as “fierce independence” (consultant); stubbornness (me); determination to prove he can do it - whatever it is (himself - I suspect); selfish inconsideration for others (our son), lack of awareness/memory of his actual capacity (a more charitable onlooker). So far, he has fallen backwards down 10 stairs at home, fallen backwards out of his wheelchair coming out of a shop lift, and collapsed in various places. So far no injury - which is incredible seeing as he broke his hip falling from a semi standing position onto the carpet.
A friend of mine once likened any couple’s relationship to their having a private language - only spoken by the two of them - and once one of them goes, in whatever way, that language also disappears. It rings so true. It is both the knowing and being known that is so precious and so irreplaceable, especially after such a long relationship. Am not sure how people cope when a long term partner dies - “just have to get on with it” seems to be the order of the day - but so much private grief and pain. Better to have loved and lost…they say - I suppose so, though to have effectively lost the person whilst they are still alive, whatever the cause of that loss, seems extra hard because one’s feelings change as a result of the stress, the tiredness, the crankiness, and annoyance etc - some of which may have been there before but not in such large doses. No wonder it is easier for paid carers to do the job - not having that emotional attachment and investment or expectation of some degree of mutuality and reciprocity - not to mention being paid and having time off!
I’m not great at asking for or accepting help, but for David’s sake as much as my own I must get better at that.
I can imagine a grandchild being equally demanding though in a very different way. I hope that he or she also brings light and joy and energy!

warm regards,
Pippa

P.S. Clonazepam seems to have helped with David’s night time leg cramps - but only a small dose (half a tablet) because the larger dose sent him doolally.


#19

Hi Pippa
My name is Colin I have had PD for 13 years now and for almost 12 years my Wife and I felt alone no one to talk to apart from the consultant or a personal nurse.
This year I saw an advert in our local paper saying Parkinson’s support group in the next town so we went and to my surprise we had a wonderful time meet other carers and people with Parkinson’s that it inspired me to open a Parkinson’s Cafe in my Village back in April and now last month We opened our second PC at the other end of the Village I have around 25 sufferers and Carers coming along once a Month on a Tuesday and the other is on a Monday we chat have a cuppa its in the afternoon 2pm till 4pm with this I find it helps.
Best Regards Colinr


#20

My husband is 56yr & I’m 54yr and working with 2 teenagers and a mother in her 80s. I can hear so loudly all the comments, life is busy but in truth empty. I feel guilty as it’s my husband who has PD, diagnosed 4yrs ago but on reflection the telling signs have been there for a number of years before. I’m in fear for the future - yes, make all the positive noises and think I am optimistic by nature but I’m scared. Our life seems to be shrinking, friends don’t really understand, how would they? Don’t I sound sorry for myself!!! Life is good but everyone wants a bit of me, I’m probably a bit of a ‘carer-sort’ by nature but over the last 4yrs my husband has had a heart attack, cancer & PD diagnosis, and I feeling stretched! I think I’m guilty of not helping by getting on & dealing with things, it’s easier sometimes that stopping to think too hard but I almost feel this has become rather a destructive route and not the best way forward. Anyhow, in truth I would really like to link up with someone in a similar position perhaps for a better/shared understanding rather than sympathy. Thanks all for taking the time to listen x0