Feeling a bit lost


#1
Hi all. Why I'm here: I'm 26 and live with my parents. Mum has drug-induced Parkinson's, which is not temporary. Her symptoms started about 10 years ago with leg spasms, and in the last few years she has walked with a stick. She had many falls in this time, which seemed to be reduced by altering her medication, however, recently we've had a big setback.

A couple of months ago she had an allergic reaction (unknown cause) and was admitted to hospital. I'm not totally sure of the details in the immediate time that followed but I believe the medication she was given for the allergy may have interfered with other drugs she was on already, or set off her anxiety, and her Parkinson's symptoms have increased dramatically. Currently she is bed-ridden and we've got a commode in the bedroom. She is slurring and dribbling and has incoherent thoughts and racing mind, (which docs prescribed diazepam for - to calm her anxieties.)

We have a wonderful supportive family who unfortunately live a few hundred miles away, and my concern is for my Dad, her primary carer. Dad is 67 and I worry that when I move out, he may have problems coping if her condition doesn't improve (as consultants are still juggling her meds.) He's a proud man and I think would be the last to admit he was struggling.

I don't talk to my parents about my own feelings as I want to remain positive, but I can't help feeling lost, and distressed at seeing her so frustrated and terrified of falling, when she is usually so upbeat. I feel really selfish in saying it, but I want the old Mum back. I can't really relate to people my age about this as it's not something everyone understands. I didn't know exactly what I wanted or expected from joining this site but after a bit of a cry and reading back what I just wrote, I feel somewhat better to have finally let it all out.

Sorry for length. Thanks for reading.

#2
Probably should have put this in the 'carers' section, sorry. Didn't mean to come across all 'woe is me' at the first introduction. I'm usually very happy :smile:

#3
Dear FlashCat,
I am so sorry to hear of your situation.It must be a heart breaking time for all 3 of you. I have a daughter around your age and I know I wouldn't want her to be agonising over my health.(although, like you, I expect she would). I am fortunate at the moment as I am in the early stages of Parkinson's. I do however think I'd want to know how my daughter was feeling, even if it ended up with us crying in each others arms; and itwould be good if her dad was involved too-good for all 3.
I'm glad putting your fears in writing has helped a bit. I wish I could help , but I can only say keep posting here. There may be someone else who can better help; & don't forget there's a helpline, number above.
All the very best.
EM xx

#4
hi Flash cat

I to am in the initial stages of Parkinson's at the moment. Life is pretty much as normal. I have a tremor and stiffness too and there are days when I find it a bit more difficult to do the things I want to do.

I think the important thing to remember is that I feel the same inside as I ever did most of my children are grown up, however my 19-year-old still lives at home.

Every day he asks 'you okay'. He worries about me but doesn't let it affect his life. Is a typical 19-year-old university student out with mates until all hours. And that's exactly how it should be.

It's okay to worry about your mum, want her to be the way she used be. I am afraid that is not going to happen. It must be so hard for carers to watch the people they love struggle and deteriorate but I promise you, she is the same person underneath. talk to her, no doubt she worries just as much about you. your'e lucky to have the support of a loving family.

Caroline

#5
Thanks for your responses and kind words. I think the hardest thing for me at the moment is coming to terms with it all happening rather quickly. She hopes that when her medication doses have been altered, she will be able to have more clarity of thinking and be able to at least walk across the room. And even hopes for a wheelchair. I'm trying to understand that she won't ever be completely 'back to normal', it's difficult though as she's only 60 and I can't help feeling a loss on her behalf about all the things she could have been doing instead. What I didn't mention earlier is that she has an amazing sense of humour about everything, and except for the few times when I see her frustrated and upset, she is often making jokes about her situation. Sometimes if you don't laugh you'll cry.

My suggestion to those with early stages is do more of what you love doing, so you don't regret not doing enough of it when you can't anymore. Also, I think I've become closer to Mum in the times when her speech was better, we talked for hours about everything. So even chatting and behaving normally is important, just as much as the physical care I think. This is your personal Everest, but you don't climb alone. :smile:

#6
Hi, I am also 26. My Dad has Parkinson's he is 55. I totally understand where you are coming from. It is an awful illness and to watch your parent deteriorate and know there is no cure is the hardest thing. My Mum is still with my Dad but she finds it very hard, most days she just gets on with it but a lot of the time I do worry about her.
This time last year Dad picked up an infection, he was in hosiptal for over a month, when he came home he was in nappies, had a bed downstairs and was pretty much bed ridden, it was awful, I am now pleased to say he has improved a great deal, his bed is back upstairs and most of the time he manages to get to the toilet. I really hope your Mum pulls through, unfortuntely most people who have an allergic reaction of get an infection can fight it off pretty quick and can make a speedy recovery but with Parkinson's and all the other drugs they are taking it is so much harder. So hang in there with her and I hope she recovers.
I hold my feelings in a lot of the time, although I speak to my sister a lot and we always have a good cry and say how we want our Dad back, it feels as if he is lost inside the illness, but do treasure those moments when this is a glimmer of him back. Speak to your Dad, tell him your worried. It is hard with this kind of illness as people do not see light at the end of the tunnel, he should try to go to a support group or look into respite.
Thoughts are with you and your family.

#7
Hi KimD

I can really relate to a lot of the things you have said. After posting here and letting my feelings out, I decided to have a long chat with Dad today about how he is coping, and he admitted that it's difficult and he is having back problems from trying to lift Mum out of bed. That's the first time he's opened up like that, and I didn't expect it to happen so easily, so I wonder if maybe he was just hoping someone would ask! It's quite a relief really.

We have made a tough decision for Mum to go in hospital (perhaps just for a few days) on Friday. This is going to give Dad a break, and is to also monitor her while the effects of her medication are changing. And we will discuss respite care in the near future. Mum understands everything that's going on, and seems to have accepted it. I will be going away with friends for a few days.

Kim, I'm pleased your Dad made some progress, it is so hard to watch your lifetime role model reduced to being cared for like a toddler. I am hoping Mum will improve enough to start speaking/thinking more clearly and at least get a wheelchair, everything's just baby steps at the moment and we have to be patient.

Take Care. xx

#8
Hello Flashcat,

Reading your post was quite difficult and sad for me as we have a son who is now 40years old and was only ten when my husband was diagnosed. I was already disabled by a chronic back condition from working in a hospital when my husband was diagnosed.
There was no support really for our son's age in the early years, thankfully it is much better now. I am so pleased you are now able to talk to your mum and dad we are all so afraid to open up and try so hard to keep a stiff upper lip when a good cry together would help us all.Our son keeps an awful lot to himself which worries me as he is single and has nobody to talk things through really, men are always more difficult to get to open up.
I am really pleased that your mum is in hospital to get things sorted out and that you and your dad are having a break. If you can get the O/t's in to assess the needs of you mum when she gets home they will get a lot of aids to make life easier for both your mum and dad. There are Crossroads carer's groups around the country and men do go to them, that may help your dad, they also have carer's in to look after your mum so that your dad can have a few hours to do whatever he likes.
I really feel for you wishing you could have your old mum back as we are in the same position even after all these years and we try to enjoy the few times we have those precious moments when things can be like old times, this applies to both our son my husband and myself, but it is very hard and really heartbreaking there is no two ways about it.
You sound a lovely family and you will get strength from one another, sharing is so important.
best wishes
vivian

#9
Hi all.

Just thought my original post deserved a bit of an update. It's been a hectic couple of weeks, but in this time, Dad and I have made many improvements to our situation. We now have a physiotherapist visiting Mum 3 times a week, and she is often accompanied by an OT. Mum is also going to be getting regular visits from a CPN to offer help with her pre-existing mental health issues. Mum is now doing a little better each day, her speech has improved since being weaned off the Diazepam, and she is now sitting upright most of the day. In a few weeks we hope to have a wheelchair delivered.

I'm amazed at how quickly and efficiently the support has come into place, since I first discussed my concerns with Dad. I'm so grateful for the encouraging messages of support on this forum. Dad still does the cooking/housekeeping side of things, and now has been taught a better technique of lifting by the physio, to protect his back. I have taken over much of Mum's personal care (hair washing etc), which fortunately working part time allows me to do.

I just wanted to share this because there will be many people feeling bleak about things at any given time (as I was 2 weeks ago), but although the condition is still present, our outlook has changed, and there's much more hope. :smile:

Best wishes to all,
FlashCat

#10
hi flashcat,welcome to the forum,im ali ive been dx for 11 half years,im 43 years old.im sorry your mom is goin through all this now,ive been on the drug dizipam last year,and i can relat how it effects somepeople who can not tolerate it,i was one of them to,speech very very slured ,fallin to sleep all the time,gettin confussed and felt like i was with the fairys half the time.im glad help is now fallin in to place,with o/t,and care for her now,it will help her your dad,and yourself.talkin about how you feel ive always said its best thing to do,i saw a councillor last year as well,cus i had givern up on wontin to be here,i no wot it sound like now,and i feel ashamed now.but things got hard,and lonley,and thats when you need friends and family surport.puk forum have a very good helpline,number top of this page,surport on the forum is great,everyone is in the same boat and is helpin one another with different things,its bringin the community togeather.has your mom got a social worker?:smile:

#11
I am glad you are getting some support . It is out there if you know your way round it ..

I rang social services because I was getting desperate and the same as you they sent out a Physio along with an assistant . They cam under the reablement team .

They cpouldnt have worked harder even giving us some extra weeks .

My husband also seems to be very sensitive to some of the medication. For example while sorting out his heart meds was put on Digoxin . I thought it was the end he was in a most terrible state .

I Stopped them myself by elimination and he improved beyong all expectattions .

So don't give up what suits one doesn't suit another . Good luck ..

We might not be medical experts but Sometimes you must trust your gut feeling , after all the doctors don't live with you do they .

#12
Hi Flashcat, Glad things doing better, nothing to add to what everyone has said except that how is Dad's back? I had a bad back looking after my husband with parkinsons and had some physiotherapy myself and massage and then joined a pilates group now no back probs to speak of and I now know how to lift and move my h around when he needs it which isnt all the time was wondering if Dad had considered it love Sunray

#13
Thanks everyone :smile:

Sunray, Dad was a manual labourer before retirement so he's not unused to twinges etc, but I noticed he was not lifting Mum from the knees and struggling to hold her. Think we intervened in time and the new technique from the physio is helping a lot. It's sort of like a tango hold! Makes me laugh when he jokes about spinning her around "like the old days". The most important thing for our family has been to keep our sense of humour! We've got that back now the practical support is in place.

#14
Sorry ali j, just noticed your question. We don't have a social worker but it's something to consider in future if needed. At the moment we're just working with the Physio and OT, who will also decide what alterations (if needed) are to be made to the house (already have rails in bathroom but she can't get to the shower at the moment), but we're trying to clear space so it's wheelchair accessible.

Not sure what exactly a social worker's role is in this kind of situation? Do they just put you in contact with other support networks or is there any support they offer directly? I might ask my friend who's a social worker, she could have more info. She doesn't specialise in this area though.

#15
I also have a friend who's a GP, I wonder why I never thought to ask them things before, haha! This opening up business is going well! :laughing:

#16
Hello Flashcat,

I am so happy that you now have many things put in place to help both your Mum and Dad. There is also an organisation called Crossroads or the Princess Royal trust which is for carer's, they provide carer's to be able to come in and sit with your mum if your Dad wanted to go out for anything, shopping haircut or even a pint with a friend and also personal care if required, you might want to bear them in mind.
Once these things are put in place it lifts the worry about caring somewhat and then you can enjoy the family life again as you have already noticed.
Good Luck and best wishes
vivian