I am in the UK and Mum is an extra care flat. We struggle right now as I do all that I can whilst working too. We seem to be arguing alot recently. I have no idea how much of her brain is there as she seems to be there but her actions towards me make me feel she does not care anymore. This results in not nice words both sides. After spending today together in the cinema it ended with an argument and she told me to leave. I did and now I am just sat at home crying and feeling guilty but at the time my mental hygiene could not take it. My step Dad abondoned her 6 months ago in the most horrific way. I have family and friends but nobody has any answers. I am truly at the end of my tether. Cant do right for doing wrong and Mum has said I should be caring for her full time. Part of me wants to and then I know our relationship would pay the price. Mum has always protected me so would never do this in her right mind. Sorry for essay but nowhere to turn. Mum has no mobility and speech is bad. It is exhausting just trying to make out the words. Xx
What to do next??: I am in the UK and Mum is... - PSP Association
What to do next??
You need to reach out and find any care agencies in your area, get them involved. I am not familiar with the UK health system but I'd start by voicing your concerns to her GP.
Ron
Hi Eurolynch,
I feel for you. We have been through the same with my brother. My mum and I cared for him when he was in his own home and he used to say the most awful things to my mum. Many a time I would get cross with him, as we were doing our best but he would always hurt us with his tongue. He felt we should be there 24/7 but my mum was 87 and I worked full time. We constantly felt guilty. On reflection maybe it was frustration on my brothers part.
Eventually I contact Adult Social Care (we are in UK). I explained what was happening and they came and gave an assessment and gradually things started moving and help was given.
It wasn't easy though as my brother kept telling them he didn't need help as mum and I could do it.
It's a long hard road, especially as many professionals haven't even heard of PSP. (I'm assuming your mum has been given the diagnosis - if not then ask your GP to refer her to a Neurologist).
It's a long journey but stay strong as it can be a bit of a fight against 'red tape' but everyone on this site is amazing and have endless knowledge. Just ask questions as you go and someone on here will have an answer.
The kindness and support here is wonderful. You are not alone.
Big hugs
Sue x
Hi eurolynch, I have been managing my wife's care for over a year now and it is relentless hard work. I am retired and can devote all the time she needs but I would hate to try and juggle working full time with caring. First you must try to get her to agree to you having Power Attorney (both financial and medical) whilst she still can. If you don't have this then she will be considered as competent and medical information would not be shared. My wife is now incapacitated both physically and mentally although we have our own ways of communicating (yes/no questions answered with the raising of a foot). You need to get the Social services involved but you must be "hard nosed" about your ability to care because in times of budgetary restraint they will play on your conscience and try to get you to do more than you are legally responsible for. Finally get the charities involved. Hospicecare and Marie Curie have been fabulous and dealt with the paperwork for me such as application for Attendance Allowance to which she is entitled (at the higher rate). I hope this helps and do not take your Mum's mood swings personally, it is this dreadful condition. My love and thoughts go out to you. Rob
Hi eurolynch!
These thoughts are very personal and are based on our experiences:
The loss of mobility and communication make the PSP patient a very dependent person.
The need arises for a main caregiver who has to take care of:
a) Case of staying at the patient's home:
- House management.
- Management with public administrations.
- Financial management.
- Supply management.
- Management of the disease.
* Management of medical visits and controls.
* Hiring, management and monitoring of specific auxiliary caregivers.
(Physiotherapists, personal hygiene, cleaning, meals, personal assistance, etc.)
- Management of the help that family and friends can offer.
- Management of the personal needs of the main caregiver.
b) Case of sending the patient to a suitable residence:
- House management.
- Management with public administrations.
- Financial management.
- Surveillance of the services provided by the Residence.
- Management of the personal needs of the main caregiver.
- Management of the help that family and friends can offer.
In case a) I estimate that the dedication of the main caregiver is 100% (I estimate 70% dedicated to matters directly related to the patient, his illness and his care and 30% dedicated to matters of the main caregiver but being aware of any novelty).
The main caregiver is usually the target of the patient's frustration. Apart from the feelings, the mission of the caregiver is "that the patient is properly attended"
In case b) also 100% and I estimate a relation 25% / 75%
In both cases the economic cost is very high. I estimate that in case a) it could be 10% to 30% higher than in case b).
I estimate that the personal dedication and corresponding wear of the main caregiver is substantially higher in case a) than in b) although that may depend a lot on the personality, and values of each person as well as the support that their environment can provide.
I think that the patient can be substantially better attended in case a).
There may be circumstances of logistics, economic, availability, patient care, patient status, etc. which can make the alternative a) unadvisable.
The decision in each moment and circumstance is very hard and involves very important physical, psychological and social costs.
Finally:
As Bill F (Smart Patients) said: "As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends / neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help. "
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hug.
Luis
I’ve found that it doesn’t do any good to argue. Just agree with whatever she says by repeating back to her exactly what she said to you, word for word. When you do this they feel like they’ve been validated (heard) and they think that you understand them even when you don’t. Using this method, what I call the “feedback technique” just remind yourself that the person saying these things is a sick person. Not the person who you have a bond with. Let her win, so long as she isn’t endangering herself. This is how I cope and the household is a much more pleasant place. Give that a try and see if it works. Best of luck to you! ❤️
Hi Eurolynch,
I could have written almost the same as you except I’m in the situation where I gave up full time work to look after my mum and it has been hard but over the last couple of weeks she’s become incredibly confused, frustrated and worst of all scared. A symptom of CBD and perhaps PSP is a lack of apathy for others so I too have been really offended at some things she’s said. What we have to remember is that it’s not deliberate. Never the less this week particularly has been incredibly difficult. I practically had a bit of a breakdown while driving to see my friend nearby and burst into tears outside the restaurant.
I like the comment above, about accepting help and not feeling guilty. It’s gotten to the point for me now that I need to get extra help in to save my sanity, me and my mothers relationship and my physical health (I put my back out this week lifting a hoist). The help will cost a fortune but mum will one day be eligible for CHC - I dread the day when she reaches that state. It’s such a dreadful disease and if she wasn’t catholic I think we would have considered DIgnitas in Switzerland a lot more seriously.
Another similarity to our situations is that my mum’s partner of 9 years also chucked her out while I was on holiday and said he wanted his life back and couldn’t deal with her disability. It wasn’t even that bad then!
Because all of this happened so quickly I ended up changing my hours to part time, then took a sabatical and eventually left completely as it was too much and she was having falls all the time and there was house adaptations to do.
I would say try to keep your job going as it’s hard to give up your life. I am slowly creeping voluntary work etc back into my life and with more help from carers (currently only have 2 hrs a week which is nothing) I can slowly start looking at a part time job. The guilt about wanting my own life back is there all the time and I feel like I horrible person but I’m only 32 and I will be an orphan with no siblings when mum goes so I really feel that to save my future self I have to build and sustain a life for myself now.
Sorry for the essay but I basically wanted to say I’m in a similar position, we shouldn’t feel guilty - we are trying our best unlike those horrible men that ditched our mum’s. Keep working if you can!x
*wanted HIS life back, not hers
* falls
Sorry for errors!
I am shocked again to hear of partners and spouses who are so cruel and uncaring, and amazed at the love and courage and generosity of the children, like you, Erialcw, and Eurolynch, who give up everything to care for their parents. It's a hard hard road, but there you are, doing the often thankless work. I hope you find some way to take care of yourself, too, at least a little. We all know how back injury can lay you low!
Small tip, if you hit the 'more' arrow at the bottom of your posted reply, you can edit it after it's been put up. I have used it often! It's a good feature.
Love and strength and happiness to you.
Ec
Thank you! I made that much needed edit!
Everyone here knows how you feel. We have all been there more than once. It is hard. Day in day out there no relief. Working a full time job and care giving makes this all the more hard to do. Being in the UK there is help you can get. Use it.
Hi eurolynch I hear you I’m in Australia but we are from England you would be exhausted Looking after mum and working too I don’t know how you do it ? You know you have to look after yourself and do what’s best for you and people keep telling me if they are in a nursing home you get to spend the quality time with them you can bring them out etc etc it’s hard for me to do that it is my husband I’m looking after . Take care xx
Like so many on this site, I do know some of what you are going through and how hard it is. I struggled with work and looking after Mum, work were very good but the job entailed travel and there are only so many times you can cope with being rung up when you are abroad that she is in A&E again. So when redundancy came up I took it but I've been very clear from the start that I need a life of my own as well, so Mum still has 4 care visits a day and I spend the afternoons with her plus taking her to appointments, etc. So she gets much more of my time but I also have some time to myself (and some time to organise appointments, carers, finances etc). Generally it works, though Mum is always trying to get me to spend more time with her, but I try & remind myself of what she said to me much earlier in this journey, when she said "I have lived my life, you must live yours" and I acknowledge to myself that the lady I care for today is still my Mum but sometimes her frustration, anger and fear of this disease gets the better of her and comes to the fore, and sometimes I am better at coping with it than at others and like you, we have words and then afterwards feel awful.
If you haven't already, organise carers for your Mum, apply for Attendence Allowance, does your Mum have a Community Matron or Parkinsons Nurse regularly visiting? If not ask her GP for this. Also consider a befriending visit for your Mum, Independent Age, Red Cross and Age UK offer this. My Mum talks very quietly and sometimes her words are quite indistinct but she has a lovely gentleman visit her once a week and it's a time when PSP isn't mentioned and it's made a real difference to her, both mood and confidence trying to speak. We're also trying a microphone, which helps with the quiet speech but isn't so good when she has a choking fit, then it's deafening!
Have you tried the PSPA help line or a local carers support line / group?
I know at first it all sounds like just more stuff to do and you don't know when you've time or the energy but it is worth trying, not everything helps but if you find one thing that makes life for you or your Mum a little better it's worth it.
And of course there is this forum, which is always here for us all.
Oh, eurolynch; I know just how you feel. My kind, silly, sweet, rockstar mom died a month ago. The psp (while short, I suppose - 2.5 years) took that personality away and the apathy it was replaced with was a double-edged sword. It meant she wasn’t fretting about her dire future, but also that she appeared to care not at all that I had 2 young kids witnessing everything. She was always, always worst with me. Now that she’s gone, I realize I was probably the only person in my family (father and 2 sibs) who could’ve handled it. With the pressures off, I can see that I was the rockstar daughter she taught me to be. While living it, though, i was a stressed mess! It was an impossible predicament I wouldn’t wish on my worst enemy. Thinking about how it must’ve been for her (infinitely harder) hurts as much as it helps. No matter what you decide re work, carve a sizeable space just for you - every, every day. My mom slept late, so I’d go to the gym in the mornings after kids went to school. And bring in help - my mom happily accepted it from strangers!! Take care. You’re not alone.
Your story could be mine (but no stepdad!). The personality change (arguing, guilting) the worst and not like I didn’t already have guilt because my mother too was an amazing person prior to the mental degradations. Mom also is not mobile and struggles with speaking. My sister tried to take care of her at home but that failed miserably - do she’s in a care facility and that seems to work best, (I can see her and do some care for her, manage all of her business affairs etc- but walk away when necessary),.but it does eat up a lot of resources.
I totally understand, it's there closest gets all the grief , my husband is the same , I get all the blame. He is in hospital at the moment, but I know I could no longer look after him, or lift him when he falls all the time, bath him , dress him, feed him, ( if I ever had time to cook), it's impossible for 1 person to do this. It's a sad time for the patient and the family. Good luck.
Thank you all. Sometimes I choose to avoid reading the forum for my sanity. I apologise for not thanking sooner. Messages were read but upsetting. Reread and upset again but realised I had not shown appreciation x
Its an emotional roller coaster.
You can dip in and out as it suits you. We all understand.
love, Jean x
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