Hi my husband and got his official diagnosis last year but I say he had symptoms for nearly 2 years before. Life was at breaking point when we first went to the doctors in January 22. Karol looks so well you wouldn’t know he was ill looking at him. Does anyone else feel like I do angry that I am losing the one I love ? Sometimes I’m sorry to say I get angry with him. But I’m often on the receiving end of his tongue then feel awful as it not his fault. So many emotions going on just now. All independence has gone I’m his carer now speech is almost non existent , he can’t write anymore also makes the weirdness sounds and when I ask him why he says he doesn’t know . Waiting for wet room to be put in place and my dining room is being turned into a bedroom as his bed is coming downstairs as he’s no longer safe on the stairs. Do there feel like me or is it just me? Sorry for the moan. Purple45
CBD & Parkinsonism : Hi my husband and got... - PSP Association
CBD & Parkinsonism
It’s not just you, it’s the life of being a carer to someone you love, it’s not easy.
Do you have any support or carers to help?
Dear 45purple. I think that we have all felt like this at sometime. It's a cruel disease and it's good that you can be honest and moan on this site as people will understand where you are coming from. Big hugs AliBee
Where is the lovely man that I married,
who shared my life and who’s love I’ve cherished?
Where is the man who would hold me tight
and snuggle beside me throughout the night?
This lovely man no longer knows how to cuddle
so when I give him a hug it results in a muddle.
Where is the man who could take control?
who would shop and cook and have a DIY role,
who built walls and cupboards, and did the electrics too,
who can now look at a knife and not know what to do.
Where is my man who poems would write,
who now can’t even get his signature right?
Where is my man who with the Morris men danced
who can’t now stand on his own, and will fall if given the chance?
Where is my man who would win every quiz
but now has no concept of time or of where he is?
Where is my man who could manage his own medication
but now grits his teeth, or spits it back out without hesitation?
Where is the man who could down a pint in one go
but now can choke on his drink, no matter how slow?
Where is my man who used to enjoy a rare steak
but now needs reminding a pureed spoonful to take?
Where is my man who would sing, whilst doing the cooking
but now only grunts as he stares into space without really looking?
Where is my man, who would show so much interest in what I’d been doing,
who now needs to know where I am, to stop anxiety brewing?
Where is my darling whose eyes would twinkle, with a wicked grin,
which still occasionally happens and helps me to see,
that he’s still there within.
AliBee1 wow these words make me cry because this is exactly what it feels like. Thank you 💜
so heartbreakingly true x
I lost my husband six weeks ago and I don’t cry because I know that he is now at peace. This poem sums up our recent lives and did bring the tears. Thank you. ❤️
AliBee,
Great but sad poem - all too true. And of course I forgot he was a Morris dancer - men of oak!
Richard x
My husband was diagnosed at the end of March this year. I had noticed changes for about three years. I just attributed them to getting older and being tired and stressed from work. I already feel the same way in so many instances. I am having to take on all of the responsibilities he used to do because his apathy is so intense. I'm also having to learn to do things that I never thought I'd have to do. He only 64 and we have been married five years in September. We thought we would enjoy a long retirement with each other. This is the first time I've written on this board, but your poem said the words I've been saying and know I will say in the future. My heart is broken and my husband is sad and scared. This is such a terrible thing.
I am so sorry that you are having to cope with all that this disease entails. I am so glad that my poem reached you enough for you to write as writing what you are feeling does help as it is so important not to bottle it up. I found it also helped me explain to people what was happening with us. We too hoped for a long and happy retirement together although my husband was 10 years older that yours. Make the most of every day and any little things that give you both pleasure but most of all take all the help that you are offered so that you do not become exhausted. It isn't easy asking for help but it is essential if you want to keep caring for your lovely man. Big hug. AliBee
Alibee1
Did you write this poem? It’s absolutely brilliant and I’d love to keep it and share it with my friends if that is ok with you as it will help them understand so much. X
Yes |i did write it and yes you are very welcome to keep it and share it. Love AliBee
What a wonderful poem! I suffer from PSP and my husband is my carer. I can relate to the words from both a sufferer and for my husband who without him I don't know how I'd manage. Thanks again for sharing👍😇
You're definitely on the same page as me I am angry this has happened to my lovely man. Nobody understands and why could they. The person you love and cherish is disappearing and is no longer the person they were. All I can hope is that I am strong enough to complete this journey in a way I will look back and not reproach myself for the times I finally crack with despair and vent my frustration on the person I love most. We are human and doing our best.
Sending hugs which all carers need when going threw this awful time 💜💜
Hi 45 purple!
It is normal for the progressive loss of your life partner to generate feelings of pain, depression and frustration. In the case of the patient, the feelings are similar. It is not infrequent that these feelings lead to anger that is usually vented on the other member of the couple.
There is a moment when, especially the caregiver who assumes the management of the situation, it is necessary to collect information, suggestions and advice to design a strategy and face the coming years with dignity and balance.
The care of the patient is the basic objective, but so is the care of the caregivers, especially the lead caregiver.
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.
On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. 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.”
JEN2017 said: “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”. And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.
Hug, luck and courage.
Luis
You are not alone in your feelings. I spent the first 18 months-2 years of my mom's diagnosis being very angry and, unfortunately, being very angry and frustrated at her directly. My father, who is her main carer used to yell at her a lot in the beginning. Anger is a part of the grieving process. You are grieving for someone who is still with you. It is horrible for everyone. Sending you strength and positivity.
Thank you for all your kind words and to know you’re not alone with your feelings. Hugs to you all out there 🤗🤗🤗💜
Every one of us could have written your post. I certainly did, loads of times during my husbands journey.
Please, please ditch the guilt for how you are feeling, after all, when did they make illegal to shout at your husband??? I thought it was part of the remit.
Steve always use to say, if I was shouting at him, he must be having a good day. I was far to nice on bad days!
Sending big hug and much love
Lots of love
Anne
no I feel the same diagnosed this year with CBD I feel life is so cruel fought breast cancer in 2021, got over that i now this. I’m 65 just about to retire looking forward to every single day x
45purple,
As you can see, sadly your experience is all too common on this forum. I have never had to put up with angry behaviour which is one straw too many (but there are many instances of it here)......Maybe try to get him to take anti-depressants?
Remember you are doing an amazing job and we here all know it.
Richard x
We have all been there
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