We have been going through a very tough time recently with my mum as my father, who is her primary carer had a fall and is unable to care for her. As I work, live in a town house with loads of stairs and have young children, I am unable to look after her either and we have had to put her into respite care for the first time. It was truly the most awful thing I have ever had to do.
My father had his fall while the family were away for a week to give him a break. While he was in hospital, there were 4 adults and it really opened our eyes to how difficult it is to care for my mum 24 hours a day. After 4 days we were ALL exhausted and at the end of our tether.
My mum needs someone with her all the time as she will stand up and fall if she is left alone. She seemed to be constantly awake and restless during the night and got up to the toilet at least 3 times so the person on duty got no sleep at all. She fights with the covers all night, trying to get comfortable (I think!) or could it be restless leg syndrome??
She spills everything, needs feeding and taking her to the toilet, lets just say that it is traumatic! She is almost completely unable to communicate and it can take hours to try to understands what she wants. The most difficult thing to deal with though is her angry outbursts. She screams and strikes out at us when she gets frustrated and she demands almost constant attention.
She is hot, cold, needs fanning, needs her jumper on and off etc,etc. She also seems to be in constant pain (shoulder, legs, hip) I think the latter is from falls she has had.
I am sure that this is nothing new to anyone caring for someone with PSP, but I just wanted to be sure that there is nothing else going on. We are so desperate with these hot flushes she has that we are going to ask for HRT for her just in case it helps.
None is this is new to me either, except the incredible stress and exhaustion of dealing with it 24 hours a day as opposed to for a few hours a day. It opened our eyes to the fact that my father cannot possibly continue to do this on his own any more. At the moment, 2 carers come in the morning for half an hour to help my mum wash and dress, but he has no other help.
Is it time to get more carers in? Or are we just being wimps and should be dealing with it better? I don't believe that we are giving my mother the quality of care that she deserves as we aren't trained and we get so impatient with her.
It all just feels like a great big emotional mess at the moment. I can't bear the fact that my mum is in a nursing home for respite. I worry about her constantly, but if she is with me, it is even worse.
I am letting off steam here which is helpful in itself, but any advice would also be so gratefully received
Cathy
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your story (life) sounds so similar to ours, my mum is just going through the process pf finding a suitable carer for one - two days a week as she needs a break from caring for my stepdad, this has been a hard decision to make as she feels she's letting him down but this is totally not the case, its draining emotionally and physically for her, i teuly believe this is a big help for both as he will have a change also, i truly believe this is a good thing to do..
Caring for anyone who has PSP/CBD is a huge ask. We never really realised what my mother was having to cope with until she had a breakdown & ended up in hospital.
At the time we thought we had arranged a lot of ' help' which allowed her some respite for a few hours every other day. What we discovered was that despite the time we were arranging she was still constantly stressed & worrying about everything. In fact she wanted to be in charge & know exactly what was happening with my father - it was almost as if she didn't trust anyone else.
One thing which did work for us was we used a 'volunteer' through the CSV. Whilst not a trained carer it meant there was an extra pair of hands available to help with feeding, getting stuff ready & someone available to stay with my father when he it was no longer safe to leave him on his own. The volunteer also took my father for walks, read to him & became a companion.
My mother is still in touch with the volunteer even though it is nearly a year since my father died.
It is so hard to let others into your life to help. I suppose I was lucky in that I was nagged quite early on to to ask for help.When the nagging (from many different sources) got worse than the caring role I took some time to write out my husbands needs and then did the same for myself and sent it to social services in order to ask for help.As a carer your dad entitled to a care needs assessment of his own alongside the same for your mum. It sounds as though he should be having much more help than he is getting so do try to contact social services. I still keep wanting to do the washing up because I don't like to leave a bowl of dirty crockery for the carer to do even though it is part of her job and we have had help for over 2 years now! We just have to learn to lower our pride and accept all the help we can get.
It certainly sounds as though your mum needs a review to see if she can have anything to help keep her calmer. There is medication that can help for this sort of thing so do ask.
I have friends who keep asking if they can help and I have only just accepted their offers and have found jobs for them. One is to prepare vegetables to puree and freeze for my husbands meals. It is surprising how much they appreciate being allowed to share the burden and help.
I can relate to your experiences and agree with the responses. The most difficult thing is for the carer to recognise when they need help. Speaking from experience, it is very hard to admit to needing help, It is so tempting to believe that no-one else can do the job as well because you know the sufferer's habits, and needs so much more, but in the long run you can be of much more support to the sufferer by welcoming help in short bursts, increasing gradually so the the sufferer can accept outside help, can accept the differences in practise from different carers. You can supervise and learn to step back, reduce stress levels, and be more fun (acceptable) to be with.
Help can be in the form of non-residential carers coming in to the home, and allowing them to perform all the tasks they are trained and agree to do, also if there is day care available so that the sufferer can get out of the house and meet other people, even if they can't communicate clearly, they can be observant of others and possibly not feel so agrieved at their own disablement when they see others possibly worse off than themselves.
Get other family members to contribute even if it is only for a walk around the block in a wheelchair, and introduce respite care for short periods, a weekend at a time to start with, extending as necessary. Much as we love and want to help and do everything for our family member with PSP, it is arguably more healthy for everyone if the burden, (and joy) of caring is shared.
This sounds like a lecture but it is the reaction of someone who did not make the decision to put my mother into longterm nursing care, that decision was made by others, using the Mental Health Act, because I admitted to feeling exasperated with Mum sometimes and losing my temper twice, (no violence).
Having had to come to terms with not only losing my mother, but possibly her love also. The trauma of the sudden change in knowing the most intimate details of my mother's care to not knowing anything about her care has been difficult to come to terms with. But in honesty I'm not sure if I could have coped with the difficulties of caring for Mum much longer, even with carers coming in daily. It was very lonely.
It breaks my heart to see Mum choking when I give her her meals, I visit daily and do as much as I can to help, and I feel so grateful that I can entrust her to others who are not emotionally involved to carry on, and I have to trust. There is no easy way to manage this awful illness.
I absolutely know where you're coming from on this one!! 18 months ago Mum fell and broke her leg. She was in a cast from hip to toe for 4 weeks and Dad just couldn't manage her at home so she went into respite for 6 weeks - it was the worst 6 weeks of my life!! She hated it, Dad hated it and it was all incredibly stressful.
One positive thing to come from it was that Dad finally agreed to having carers. Mum 2 carers, once a day for 5 days a week and this has provided some relief. The family take it in turns to visit every day to give him a break and allow him to walk the dog. I help out with housework and sit with Mum so that Dad can go shopping.
It absolutely sounds like your Dad could do with some more help. There are sitting services and daycentres available in most areas and the amount of care your Mum has can be reviewed and increased. Your Dad should ask for a Carers Assessment -which is nothing to do with your Mum's needs but focuses on what your Dad needs. You should contact Social Services in your area to arrange this. Also I would suggest you contact the PSP association as they are setting up a volunteer befriending service and that may also be available in your area. It might also be worth speaking to the PSP specialist nurse for your Mum's area - the are SO supportive and helpful. Again, details of how to contact them are available on the website
Maybe talk to your Mum's GP and rule out any infection that might be making her restless or giving her increased pain. The GP maybe able to review her medication and suggest something to help.
I'm glad you feel able to let off steam - we've all been there, done that! and know how you feel.
If you want to talk send me your email details and I'll let you have my mobile number.
Thank you everyone for your replies. There is absolutely no underestimating how profoundly it helps just knowing that others understand what you are going through. Some very practical suggestions too when we are struggling to see the wood for the trees.
It is like being stuck between a rock and a hard place, it is so physically and emotionally draining caring for my mum but so hard to entrust her to others and to wonder all day and night if they are looking after her well enough.
Perhaps it is just an acceptance that NO decision is going to be easy and that we have to take our own needs into account too, not just my mums.
Sometimes we need someone to tell us that it's ok to ask for help and that we are doing all we can. Thanks Kathy, I will be in touch.
Hi Cathy caring for a patient with PSP is difficult so no you are not being a wimp. My husband does all that your mom does but no angry outburst. She may just be frustrated as your dad was most likely more in tune with her needs and she cannot relate her desires to you with her lack of communication. I am a young 50 year old in good health and I NEED help and lots of it. Your dad and you need good caring caregivers sho understand this disease. Continue to educate your help regarding the things your mon needs. These are very needy patients but your love and care can make a world of difference. Hang in there sweetie.
Hi there,
Maybe I am a wimp but I found that caring for Geoff full-time was just too hard! There were different carers coming all the time - one an 18yr old skinny little girl who was unable to push him in his wheelchair in the park because he was just too heavy! Another I returned from a short shopping trip to find him in a different room to Geoff and using my computer!
I finally collapsed and Geoff was taken into a wonderful care home for respite - he and I agreed that this should change to a permanent basis and then the time I spent with him was true quality time.
I see him for 2hrs every day and because he was awarded a full grant on his care home expenses (nothing to do with the amount of money he had) funded by the NHS - he can also afford private carers to come in to take him for a walk every day.
Please don't be afraid of nursing homes just look for the right one!
I love the time we spend together now.
It had got to the stage that if I sat down and he asked for a drink I just exploded at him even though I knew he was doing nothing wrong - I was just exhausted.
Keep your minds open to this and the best of luck.
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