My husband’s diagnosis came about 25 years after the first symptom. (Frozen shoulder) He has had Type 1 Diabetes since childhood and doctors ignored his new and changing symptoms until tremor and weakness in the affected hand and arm got so bad he was sent home sick from work as he was a health and safety risk. I’d just got to know him when the frozen shoulder started so we’ve been living with gradual changes for 25 years. I am so angry everybody - including him - just accepted his unreliable memory, his increasing bad temper etc. and I got really frightened of him when I WFH in lockdown, had to agree with him all the time for fear of him turning on me, To top it all, doctor gave him anti tremor medication which is strongly diasdvised for diabetics, he collapsed and nearly died. Straight back to work after 10 days Covid isolation. (Essential worker). I even kept and keep a diary to record events he conflates, misremembers, confuses or doesn’t remember. He never returned to work, retired after 18 months sick, 6 months on basic pay, 6 on statutory sick pay, 6 months with no income whatsoever - and he was in no fit state to relay this to me. I only found a nil payslip when sorting out his state pension claim. That said, cobeneldopa made him much calmer and easier to live with and we got married to secure my legal rights to our home and finances while he could still function more or less. I got made redundant 5 months ago and can’t work again. He doesn’t go out alone any more, it is like something has switched off, he just can’t go. I am his memory, (he now realises he gets confused) his chaperone, I explain things to him, I explain for him as his reasoning and communication is failing. I have to remind him when to take cobeneldopa without making it too obvious I do so. He won’t have Powers of Attorney or make a Will. We do have joint accounts to make things easier when one of us dies. He can still dress and wash and feed himself so we can’t claim any allowances yet and he’s too proud. We have no children and no family nearby. I am busier now than before I left work. Fighting the pharmacy to issue medications correctly takes half a day each week. I hate leaving him alone one weekend a month when I visit my centenarian mum. Luckily she is finally in a home with my sister having been main carer and now visitor. I, like my husband, have no energy, little interest or time for anything, we’re tired all the time, we can’t go anywhere interesting… And friends, family and outsiders think that Parkinsons just means tremors or freezing and don’t, won’t or can’t understand. And my husband is not yet incontinent, immobile or completely demented. That’s yet to come…
It’s a sad way to spend your retirement years - I understand. Serious chronic illness is so difficult. After the initial diagnosis, often your “support” system breaks down and you realize that you must find a way to get through life one day at a time. This may sound strange but I feel fortunate that my husband and myself have PD (my husband has probable MSA). We both suffer from apathy so we are not interested in doing much outside of our home. Grocery shopping is my morning out of the house along with doctor appointments. I often think of couples where one is chronically ill and the other wants to enjoy life. It would be so much harder - and it sounds like that is where you are. I hope you can find a way to give yourself needed breaks - a half-an-hour walk can do wonders. Jigsaw puzzles helped me get through winter - I put on some music, light a candle, sip a cup of coffee (or a glass of wine) and lose myself for an hour a more a day. Little things like that help me to cope one day at a time. Wish you well, Iris
Thank you for sharing your thoughts on this.
Certainly I appreciate that although there is commonality, there is also uniqueness in that not every journey is the same and this forum reflects that.
I wish you all well 
Hello, I am new to the forum. I am caring for recently diagnosed 91 year old mum.
I have all sorts of questions and looking to share.
What I have found is that caring is more difficult than my previous office work.
Hello Belles1
I just wanted to say hello and welcome you to the forum. There are lots of posts about all sorts of aspects of taking on the carer’s role on the forum and you may like to have a look at some of them - they may answer some of your questions. Have a look at the other posts in this section as a starting point but take some time to explore the forum a bit more as you will find some relevant posts in other categories. You can ask any questions you like here on the forum, there is usually someone and often several someones who can relate to what you are asking and come along to offer help and advice. The main Parkinson’s UK website has a lot of information and guidance and you can always ring the helpdesk and speak to an adviser if this helps. The carer’s role is not an easy one, but you will find support here on the forum for whatever you may need, a listening ear, somewhere to let off steam, someone to hold your hand while you have a cry or to hold your hand or send a hug or share a smile. Nobody will judge you because you will be talking with people who know and understand. You need not feel you are on your own.
Best wishes to you and your mum.
Tot
I was made redundant last Autumn and cannot get another job as far to busy being my husband’s carer as he has gone downhill fast in the last year. It’s very isolating and exhausting when you have no children to help