Working

Retired in February to take care of my husband 24/7 he can not be left at home. I have a chance to work one day a week from 1130/530, I would have someone watching him. Is this being selfish of me to do?

[Hidden]

Hi Penny... not selfish in my opinion... Sending Hugs... Granni B

[Rustington]

Not selfish in my opinion, either! You need to keep in touch with real life if you have the opportunity to do so. I gave up my few hours a week work a year ago to look after my husband. It was definitely the wrong thing to do. I find myself really resenting him, and getting cross with him, then feeling guilty (that's why I'm still up now, because I've been cross with him as he couldn't brush his teeth, whereas earlier today he took himself upstairs and did it no problem!) - I can't sleep now because of the guilt!So, my advice would be to keep in contact with people and have at least one 'normal' day a week!

[Hidden in reply to Rustington]

Thanks, I’ve worked 2-3 jobs for years and I just feel like I need to work at least a little bit. Don’t beat yourself up for being cross with your husband we all do it.

[Martina_MP]

It’s important to have something going on for yourself and be able to get your mind off caregiving for a while. Sounds like it would be fulfilling, and a good way to get someone trained to give you a break at other times.

[Caro2132]

Go for it ! I don’t think it’s selfish, you will have someone with him while you’re out of the house, and we all need “me time”, it regenerates our batteries and makes us better. Good luck with the job and keep us updated !!!

Love

Caroline

[AnneandChris]

Absolutely, go for it. You're not being selfish at all. You need to keep some normality for you. Keep on keepong on.Anne

[LuisRodicioRodicio]

Hi penny1956!

My particular opinion: NO.

These are our experiences about:

*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.

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, not lose contact with the environment and develop as a person, too.

The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.

From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.

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.”

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.

There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.

No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything he can is not obliged to do more.

It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.

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!"

I hope and I wish these notes are useful.

Hug and courage.

Luis

[Tunupup]

No you are not selfish. You need to take care of yourself too. I looked after my sister while her husband had a game of golf. Look after yourself xxx

[Dance1955]

Hi Penny Retired ? I don’t think so and yes go for it not selfish at all well done for looking after your husband one day a week normality sounds like a plan 🥳👏👍x

[AJK2001]

I don't think this is selfish for one moment. I think it will be hugely beneficial to both you & your husband. You will both get a break from each other which will do you both good. You will both see other people, which again will do you both good. You will have other things to talk to your husband about, which will help things seem a bit more normal, even though we know they are not. Go for it!

[Heady]

100% Definitely NOT! Unless you do something that will lay you flat for the next three days, even then, as long as you have cover, then that’s fine. Looking after someone with PSP, full time, takes everything out of you. You will need to get a break, have something else in your life, to help you through this journey. Life is not all about your husband. In fact, for his sake, it is vital that you get this break. One thing I learnt during our journey, is the Carer is the most important person. If you are not on top of your game, then the whole stack of cards falls, with your husband left under the debris.

Sending big hug and much love

Lots of love

Anne

[Indiana-Girl]

Absolutely not selfish on your part! You must take time for yourself if you are going to be able to take care of him as you would like. Take it from one who has been and is where you are. If you don’t get away, you will become frustrated, angry and resentful. It is than you are most likely to say things you will wish had never been said and can never be unsaid. Take time for you so you can be a better you for your beloved.

[Yvonneandgeorge]

I so agree with heady xxxx

[Scottoppy]

You need to take care of yourself to be able to care for your husband, time away is crucial to both your physical and mental well being. Not selfish at all

[ncgardener799]

HI Penny, Sounds like this is something you would enjoy doing-go for it!!! In my opinion it is Not selfish at all. Actually quite the opposite -caregivers are vulnerable to so many physical and mental concerns given the complexity of caring for a PSP loved one . A job could be your saving grace-time to do just a little something that feels like the way life used to be. Hopefully you can find a good care person for the time you are working. Please Keep us posted on how it goes.

[AliBee1]

Certainly not. It will almost certainly do you both good to have a break from each other and it will help you to cope better. Good luck. AliBee xx

[Cinnylou]

Go for it! When my husband was sick I HAD to keep my job, as I needed the health insurance for myself as I’d been diagnosed with cancer during that time. Turned out to be a saving grace. I could shake off my caregiving worries the hours I was working and focus on something besides my poor hubby. And I was able to share my troubles with my work family. That in itself was like therapy to me. They couldn’t fix my situation for me or cure him, but just having people to vent to made a big difference for me.

[Caralime]

Hi Penny , I took flexible retirement three &@ half years ago to look after my husband so now only work two 12 hour shifts a week. My job is in care but 2years ago my husband had to go into a care home as I could not keep him safe at home and he was falling alot even when I was with him. He had no safety awareness & was so unpredictable as other PSP people are, He has been ill for six &@ half years & is now in the latter stages & get to visit once a week for 50mins & each visit gets harder than the previous one. He hasn't spoken for a long time & wears splints on his hands for the palsy. He is losing weight rapidly now as has a delay in swallowing, he has his eyes closed most of the time. It's heart breaking to watch , but it is a release to go to work just to have a distraction for some of the time . So I say go for it to give yourself some respite. sorry if I've gone on a bit , not in the best place at the minute. Take care Xx

[Inarticulate]

No - it’s not selfish to maintain your mental health, interact with others and maintain a social group. You are a better carer for him for doing it, as you need a change as much as he does. Please do it.