This is my first time posting. My husband was initially thought to have Aphasia, but after further investigations, he was diagnosed with PSP 2 years ago at the age of 57. His speech is now very poor & he is getting more & more unsteady on his feet. I work full-time & am dreading a time when that will no longer be possible (I am 55 & my job has always been a huge part of my life).
I am very fortunate that my son works from home & my family are very good at helping when they can. I am starting to struggle with managing & have felt increasingly overwhelmed. I am starting to think about what support we need but do not know where to start. At the moment, my husband is still going to the local gym 3 times a week (they are aware of his condition & watch out for him), but I am just waiting for the first fall. I would like to find someone who works as an 'enabler' & could perhaps accompany him to the gym etc so that he is not just sat at home. Has anyone accessed anything like this?
Is there anyone else looking after a husband or wife of a similar age & still trying to work?
Blueberry 95
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Blueberry95
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My husband is 63 but started having symptoms age 59. Up until maybe 9 months ago I could leave the house during the day knowing he could muddle through on his own as long as I left food to heat up etc. Almost overnight things changed and he needed me more and more until now he need 24/7 1:1 care … that’s in the space of 9 months.
I began getting carers in 6 months ago to help me and sit with him fii Ir a couple of hours so I could go out. I think start looking now for a daytime carer. Maybe you will have to self finance depending on your husbands circumstances. Remember your finances are irrelevant for assessment. You can find self employed carers on Facebook or by asking around. Unless you have family that can be with your husband all the time you will need carers full time eventually if you are working away from home.
Dear Blueberry 95,I'm sorry to hear you are now in this "club" that none of us wanted to be part of.
I'm 54 and have a career I enjoy and still want to develop. My husband is 14 years older and was diagnosed with PSP in June 2021. His symptoms were unexplained falls and slurred speech; in hindsight there were also irritability and some obsessive behaviours.
The first year he remained very independent; still driving and going to the golf club, he managed to wind down his business and help organise our move to a bungalow in a village location.
My husband wanted to stay in his own home and make his own decisions, stay close to his grown up children and his grandchildren, and enjoy his life.
September 2022 he had a fall from height (impulsively climbing a ladder to clean the gutters while I was out) and broke his heel.
Overnight, we had to adapt to a completely different situation where he needed help with everything.
We found a neurophysio who helped my husband get back on his feet; without that help I don't think he would have wanted to go on.
Once my husband was recovered from the fracture, I brought in carers one day a week so that I could go to the office and maintain work relationships.
Another year on I still work full time; mostly from home. Now I have carers (half and whole days) 5 or 6 days a week, as he cannot be left unsupervised, day or night. The paid carer(s) can focus on keeping him active and happy while I maintain a semblance of professionalism around 30 hours a week.
The rest of my working hours I'm constantly listening out for sounds from the living room, and run to his rescue if he has fallen or is choking. My colleagues understand and my employer has been very supportive, they even have an official carers policy which entitles me to paid and unpaid leave, so I don't feel I have to choose between working and caring.
My husband falls frequently and has lost impulse control, so cannot be trusted with money or vehicles (barely even with the fridge or the remote control).
I've lost sleep and lost weight and have been feeling overwhelmed and fed up. Still, after so many years of marriage I want my husband to be as happy as he can be with this disease.
My advice would be
- swallow pride and accept offers of help
- money can't buy you happiness but it can pay for things that makes life easier; sooner or later social services or NHS will take over funding, so get what you need now.
- ditch guilt and be kind to yourself
- talk to your employer; they shouldn't press you into reduced hours or leaving unless you make that choice - they have a responsibility to make adaptations to help you stay in the job
- find a community that can help you through the hard days as they arrive
Hello, my partner was also 57 years old when he was diagnosed in 2022. He was working at the time but has since taken ill-health retirement. Like you, I am still working full time and work is a very important part of my life. When we first got the diagnosis I imagined that by now my partner would be in a wheelchair, but actually he has been pretty stable since diagnosis. He has been taking daily exercise which I think has really helped with that - he has an exercise bike, a yoga teacher comes to the house once an a week and he goes for regular walks. He also goes Nordic walking once a week with a group of Parkinson’s sufferers (I think he’s the only one with PSP). He wouldn’t risk going to the gym, but there are plenty of other ways of getting exercise. Like you I was really worried about falls, but so he has been careful to modify what he does and has managed to avoid any serious falls. Using walking poles to get about (e.g. the Nordic walking) makes things a lot easier. I would say that it is really important for you to carry on with your career, but that there may come a point where that means getting carers in - we haven’t got to that point yet so you may have longer than you think.
I'm in a similar boat; my husband, Mark was diagnosed in 2021 at the age of 56. He has very little mobility left now; he can shuffle a couple of steps on a U Step walker between wheelchair & bed, but that's about it. I work full time, however my employer has been very accommodating and I can work from home. I'm on site to take care of things such as food & drink, loo and any unexpected dramas. I have a simple call bell watch that Mark can press to summon me. I flex my working times depending on how much time out I've spent on domestic matters. I have carers arranged by Social Services coming in in the morning to do showering & dressing . My son and daughter will stay on hand if I need to go out; it wouldn't be safe to leave him on his own. I'm pretty exhausted but it's just a matter of keeping going and as others have wisely said, ditch the guilt and get as much help as you can.
Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.
The work of a caregiver produces a STRESS that is good to face the challenges that the diverse and changing symptoms produce.
If the caregiver does not have effective help and that STRESS is not adequately relaxed, it is likely that this will lead to ANXIETY trying to personally reach out and solve all the problems. If ANXIETY is maintained, the nervous system is blocked and if this situation is maintained over time it can lead us to DEPRESSION, a mood disorder that can lead to very negative situations such as not feeling useful due to being overwhelmed, generating harmful thoughts such as hating oneself being able to reach very serious situations.
Statistically, DEPRESSION affects women more than men.
Without health you cannot love or care for anyone in good condition.
In short, the caregiver must take their own physical and mental health and well-being very seriously.
Reproducing the phrase of Anne-Heady: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
I know what you mean about wanting to stay on the job. I worked all the way and kept my sweetheart home except for a couple of weeks of respite care and one in patient stay when they were tweaking his insomnia meds.
I had people, one private aide, who was a godsend, and various aides from agencies, come to stay during the day while I was at the office. I was able to come home at noon. The private aide was a wonderful help, quite capable of providing transport.
It was very hard, though, and the falling became increasingly hard to manage. I was on my own at night and was pretty well worn out most of the last two years. I sometimes regret working so much, but there are always regrets.
We’re in the same “club” with you! I’m mid-fifties, working full time, and my husband was working full time until last month, when a fall at work threw everything into turmoil. He’s okay and managed not to hit his head as he went down.
We had our kids later, so now both are in high school, and thank goodness one is driving! We can just barely keep all the plates spinning. We skip so many of ways parents are supposed to volunteering in the kids’ extracurriculars. I don’t know how we will continue to manage my working once falls get worse.
I wish I had something helpful to offer, but wanted to say hello that others are out there. I don’t get on the site as often as I’d like …But have so appreciated this site, and the generous people who have stayed on to give advice even years after their loved one has passed. A big shout out to them!
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