I’ve been living with my husband and PD for over 10 years. He has deteriorated over the last year or so. I retired in 2017 so spend more time together now. I feel just so pissed off about the illness, I know it’s irrational and it can’t be changed, there’s no cure (ha, that’s another thing!!) etc. but I am so bloody bored with it now. The restrictions on daily life, holidays what can and can’t be done, as I tell friends and family there is nothing that it doesn’t affect. Some of the list, walking, talking, eating, sleeping, pissing, shitting ……… and I am so very exhausted with trying to make life roll as smoothly, normal as possible for me and him. But it is so f*****g relentless. A voice inside rises up every now and then and says ‘what about me?’ and so it goes. On and on and on…blah blah blah. I then get the guilt and stuff comes in ‘I don’t have it , I don’t have the struggle etc etc’ and I can end up feeling that I am a terrible person, because a lot of the time I am not a sympathetic person and I just really don’t want to make that meal, clear up that mess, put his clothes away. But there is no choice either for me. I still love him, often I don’t like him because he is not the person he once was, not aware like he used to be, doesn’t give emotionally like he used.( more to the list there!) I get times with friends and family, and away too, so I have that support. However, I am still doing almost everything on a daily basis, and I know it’s going to get worse. So I needed a rant and I read what other people have going on and I’ve held off, but this is my experience and how it’s affecting me is also of value. Anyone else identify with these feelings? Need I ask!!! Meg B.
You have every right to be upset about your situation and your statement that you love your husband but sometimes don’t like him is in absolutely no way selfish .
In fact it’s completely the opposite it’s a mental defence mechanism to save your own sanity and one of the most brave , truthful testimonies I have read on the forum.
Why indeed shouldn’t you not cook, clean and organise daily life if you don’t feel like it ?
The short answer is guilt , it’s what the government and local councils want you to feel and deliver quality care on the cheap .
Then when you end up ill too they will start on you , sending you for assessment by someone who really doesn’t give a toss about you or the savings you have already made for the healthcare services or the cost to your own health and mental well-being.
I could rant on about my own situation and say it’s this or it’s that and sound like I’m trying to say mine is worse than yours .
But you know that platitudes like that only make you worse.
Or maybe I could suggest a helpline or something but I know someone with severe tinnitus due to an accident and the person called a tinnitus helpline only to be asked , what does yours sound like ? And then say " oh you’re lucky ,mine sounds like a jet taking off" CRAP
Everybody case is the wost it’s as simple as that.
I do however appreciate and applaud what you have achieved so far and I wish peace of mind for you and every other carer in the country and hope you are able to carry on with your husband’s care but at the same time urge you to at least attempt to ban the guilty thoughts from your mind whatever the future holds for you both.
It’s ok to say why me? But I can’t say you will get an answer after all who gave the leopard spots and taught the birds to sing?
Take good care of yourself too you are a good person ’ remember that.
Megzee18 your being very normal feeling tired, angry and wondering why me Lord! T1 has hit the nail on the head. (guilt) You are dealing with a big pain in the bottom. My wife has me to deal with. Our better 1/2’s are appreciated more than they know. One thing is for certain neither the the person with PD and the Caretaker could possibly know what the future was bringing.
I am losing my ability to walk as time goes on. Every night in the back of my mind for my wife’s sake, I wish that I would not see the sun rise. The worse thing for many of us is that our face is blank. Like a wax figure. Some of us speak very few words. Our feelings are not communicated like they once were to our spouse. Many of have lost our common sense of thought. With that lose we seldom comprehend all that our loving spouse does for us.
I am lucky that at this time my mental lose is minor. But I am going out on the limb here in that I am going to speak for your husband. Here is what he wants tell you.
Thank you Meg! If I had to do for you what you do for me. I probably would be at the end of my patience, tired and angry thinking why me. Your husband is very blessed you came into his life!
HE KNOWS THAT!
Hi Megzee18 and I can’t tell you how sad and upset I was to read your mail. My mother has had PD for over 30 years. Until 6 years ago my father was her sole carer. He passed in 2017 from pancreatic cancer, but we overlapped the care for the last 6 years so I could help him as he was 88 when I arrived and I was a new widow and felt now was the time to give to my parents…many a time he’d just be sitting there looking forlorn and say the same things you have mentioned above … only difference was that he was really, truly tired after 30 years with mother … well, I’ve been here alone with her since 2017, her PD is getting worse, and she also now has dementia. The restrictions on my own life have been increased since father’s death because I’m alone with mother, but I’m housebound and vertually living the life of a PD patient myself. I don’t get enough sleep. I don’t look after myself well enough and often feel completely drained and very miserable. Mother has hallucinations and worries about the simpliest of things and ensures that I worry too…I get panic attacks … my arthritis plays up … you name it and it all happens around here … but my one and only strength has come from my faith in God. I don’t know how you feel about this but I can tell you that without this faith in God I could not be here, do this, be strong, be anything at all. I was baptised in 2016 and have never looked back really…gone from strength to strength. God has helped me in His gentle way every step I’ve taken…the patience that is required, the level of care, the changeability of the patient no matter how close the relative, the PD itself, literally everything and then some … and then to cap it all my attitude so that my own anger is abated…God be with you is my prayer for you today and I hope that you might find the strength to continue with your very capable and caring care of your husband…and look after yourself too. Lots of love to you both. XO
I can empathise with all of the above and my biggest regret is having no one to actually talk to about how I feel…I always get asked how my husband is etc and people tell me I am strong as I have always worked in care…yes I have been a paid carer for 38 years…go to work,enjoy my work, support peoples needs etc etc…then I go home…it is very different living with a husband who has PD…its relentless and heartbreaking to watch the person I love slowly changing before my eyes,knowing that I cannot change anything…as you all say the list is endless…sometimes I wonder what we have done to have this alwful PD in our lives??? No one has any answers…and no one really asks how we manage…I would just love to go somewhere and scream,shout and swear to get people to understand what all of us live with daily…but no one really wants to know… sometimes I hate it all…
Dee…I was baptised as a Christian in 1994…so have lived a christian life and been going to the same church since 1994…a long time…the people in my church have never asked how things are or offered any help…so I struggle with my faith…if there is a God why do Christians behave like they do? I am the 1st one to offer support and help if people are struggling…my belief in God dims each week…and I dont mean any disrepect to you…I am glad your faith is strong enough to help you…xx
Thanks for your kind thoughts and message Dee, what a task you have. Your poor mum having PD for 30 years, didn’t think it could last that long. The God route is not my thing and I also realise that many people are dealing with far more extremes than I do.
Yes I feel like running away, screaming and shouting too!!
I hope you can get times to yourself and meet up and do things as you as an individual, meet up with friends and family. Get drunk, have a laugh, without wondering about someone else. I am lucky as I do have time away from time to time, and friends who are willing to listen. My husband, despite my frustrations, is understanding of my frustrations. I hope yours is too. Still doesn’t alter the fact that what we had hoped for in our retirement can not be realised. Remember your needs are important too. Megzee
Thanks for being so honest about some of the frustrations you are currently facing as a carer, I’m sure it wasn’t easy. I can’t begin to imagine how challenging things must be for you, however, I hope the supportive comments on this thread have reassured you that you are not alone. I’d also like to remind you that we are here for you too, we have a range of support services for carers like yourself including local advisers, local support groups, exercise classes etc. We have a lot more information on the support available to you here - https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
You may also find that stay at home care support for you and your husband may be beneficial to you both. We have more information on this here - https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes
I hope you find the above information helpful, if you have any questions or need additional support on this, please feel free to contact our helpline service on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
When I read this post this could so easily be me writing it. This is also how I feel most days. My husband is 18 years older than me and the age gap has never mattered. He has been diagnosed with Parkinson’s for the last 15 years but it is only in the last 4 or 5 that things have got really bad. I still work full time and am a shift worker which makes it difficult to have carers as we wouldn’t need them every day or at set times. I can’t afford to give up work, nor do I want to as it might sound selfish but my time at work is my respite. We have children together and he has 2 by a previous marriage. His kids think that by the occasional phone call or a visit once a month they understand what it is like to live with him and think I am a hard faced cow by not being with him 24/7. Our children do try to support me but live quite a distance away so it’s quite hard for them too. His kids live local and will say if you need anything just ask and when you do they are always busy, even if it is something a few weeks away. We do have the occasional good day where it’s almost like having the old person I married back but unfortunately it doesn’t last and then I start to feel sorry for myself again . I do realise it’s him that has the condition but it’s also us as carers that have to live with it also. Take care
Hi Jackie, thanks for your reply and expressing your frustration too!! At least by writing it down it gets it off our chests so to speak. It’s difficult to get support through family, I think, in many ways as they find it a bit unconfrontable seeing the their father/mother in such an altered state and then to explain the complexity of their needs is quite a list. I felt the same about working, but I did retire in 2017. It means we spend more time together and I have to initiate most activities we do together and try and gauge how things will pan out. Don’t always get it right of course, but have to remember what works and what is too much to attempt to do. In fact it was after a day out that brought my outburst last week!! I hope that apart from work you get some respite? Maybe try and have a meeting with your family and talk things through about what it’s like for you, do they realise etc etc. Wishing you all the best.
Just one factor to consider. Having been with many Carers, spouses, families over the years (and now I am a PWP) alongside the guilt is grief: mourning the life you once had, mourning the slow loss of the person you have loved and lived with for many years. A lot of what you describe@Megzee18 sounds like grief so please don’t feel guilt at feeling guilt. You are honestly describing and articulating for many people the complex emotions of caring for someone with a long term health condition and that anger is an honest response to an impossible and overwhelming set of circumstances you find yourself in. You may not go around with your underpants outside your trousers or a cape swishing around but you are a superhero and deserve grateful thanks from all of us.
Wishing you strength and support from those around you.
Hi Megzee 18
You have written it all down so well I hope your rant made you feel a bit better, especially now that you have had several replies showing how you are not alone. Us carers need all the support we can get. I suspect my hubby and I are older (just in our 80’s) so we had been retired some time when he was was diagnosed twelve years ago, but we still had plenty of plans, then.
I am lucky that my daughter is beginning to understand a bit more of what is involved as a carer. I am thinking of forwarding your letter to her since it says so much that I have wanted to say for some time. May I forward it to her anonymously?
Meanwhile keep in touch on the forum, there are plenty of us who need that chance to say how we are feeling . I am only sorry my hubby can’t let go of his feelings and have a good rant.
Hi Babesbrown, I am sad to hear of the lack of support from the people in your Church. Unfortunately in my experience many attend Church for years, going to services and joining in social aspects, but it does not make them Christians. Helping others even in small ways, showing concern, listening, simply being there, all acts of caring just does not occur to a lot of people.
I know God hears you, and I pray you are aware of His love for you and he gives you peace and strength.
Babesbrown, I know just how desolate you feel sometimes. I’m also a baptised Christian … but first when I was a child by my parents … then when I was a very big grown up, by water, born again into Jesus.
I have also lived what I thought of as a good christian life. I also attended church regularly.
But until I was baptised again in water I never really knew the true meaning of what I was wanting … and since that day in 2016 something happened to my heart …
Meanwhile there are christians and christians. Most believe that they are doing a good job, helping others, helping themselves. But they don’t realise that they are only ‘‘people pleasing’’.
My aunt is a Christian … she believes in God so firmly that in the beginning I was in awe … but slowly I became disallusioned … she helps too, she does things for people, feeds them … but I have come to the conclusion that these people still have egos. They want praise for their work. They always say: I did this, or I did that. They also NEVER help anyone outside of their christian group. No time, my aunt says. Don’t know that person, my mother says. Don’t trust strangers, yet another person says …
But what would Jesus do?
There you have your answer. Forget all the other people, give them to God to sort. Don’t worry about anything if God did not ask you … give God your first thoughts every day, your last too … pray … read the Bible and form a committed relationship with God.
I have never been interested in denominations and what other people have to forcibly portray about God … I prefer to go direct to my Father in Heaven through the Bible … it’s all in there for knowledge.
But therein lies the first hurdle…understanding. Like most people I did not fully understand because it was all relayed through other people. I was not therefore understanding. Floundering away as usual my uncle from Australia read an article about free Bibles and put my name down…and with the free Bible came ‘‘Bible Basics’’, the book that explained simply what the Bible was telling us, teaching us. I never looked back. Everything slotted into place. Finally, God had led me here and this was not a place from where I would have to learn to do this, but to learn through knowledge the true meaning of God and His Son Jesus, and to make up my own mind and form a relationship with Them Both. And finally to get baptised into Jesus by full emersion into water…
Amid all my troubles that has been the highlight of my life. I wish that I had done that a long time ago. But what is time? It matters not if your attitude towards your faith is set on the right path and you have the right relationship. Never stop being the person you are. Don’t allow yourself to be disallusioned. Don’t struggle … God wants you to live a happy and fulfilled life (yes, even with the burdens) … leave the bad stuff for Him to sort.
I know you have doubts about this but this is SO strong and if you arrived here…now…then perhaps God is calling you…
If you’d like to find out more I am very happy to give you the link … ?
Jackie2B, I don’t know if anyone would understand PD unless they experienced it themselves … as a patient or a carer living with someone with PD. I’ve cared for many people with different problems over the years but never, ever, has the full extent of PD become so deliberating for me too … not just the poor person with PD.
I’ve found that mother can change daily. The depression at the moment is perhaps the worst to handle. I’ve found also that mother is the kind of person who complains about something and sort of sinks into it by rounding her day off with all those miserable memories of unhappy times/people dominating. As a mind disease this has got to be the pits … it really does … because it is not just their minds but yours too.
I do so hope that you will find your own ‘happy’ way to deal with PD in its many forms, and still love and support your husband and children, and remain joyful and hopeful. Most importantly, I hope you’ll remember that you are a very special person.
Hi Megzee18, We can all sympathise with you at some time or other. Not only other carers but those who have this debilitating disease. Can I just point towards a post you can find in search - (today I cried for me - July '18) a poem that was posted which is very emotional and just tells how it feels to be on the ‘other side’. I don’t want to condone what you have posted and I have only praise for those of you who have this burden put on you, but we who have parkinsons feel the burden for you, and would never wish it on anyone to have to take on the responsibility. It is not an easy thing to do and it is evil enough to come between relationships quite easily. We have been married 46 years and I have had parkinsons for just eight years, and I can honestly say we have argued more in the last eight years than all of our married life. I cannot give you any answer or guidance on what you should do, but it’s your life and for you to do how you feel what is best for you, I can only feel sympathy for you and praise. Keep having those rants if it keeps you sane!
Thanks for you repost! What you write is true for my husband and me too! We have some intense ‘discussions’ too! My husband is a song writer and he’s written a few songs about his PD and brings people to tears with his honesty and simple description. He is aware of the impact on me and we have cried together about it. I know he can’t help how he is, but the f*****g layers of complexity about how it affects him, me, me to him etc. and I often feel like I am a terrible person as I often don’t behave or treat him with the dignity he deserves. I have also brought up 4 children, worked in school which is about care and nurture, and at such a deep level I feel exhausted. And I know it is nothing in comparison with the exhaustion of having PD. So the internal battle continues. I am fortunate that I can go out still and leave him for a few hours but not for a week end. So the view of life and what it can bring gets narrower. The bottom line is that it will not go away,it is with us until one of us dies. Try to see the positive in this illness? No. not for me. It is a cruel, complex one that destroys body, mind and spirit.
Hi Megzee18, yes you are so so right about the fact that it is such a cruel disease, and with us all to the end of life, but I sometimes think there is always someone out there that is worse than me be it this disease or another one very very similar. Don’t know if you managed to find the post I mentioned, it is really worth a read!
Sending you a cyber hug and hope you cope a little longer, we are all with you and your hubby in your plight xx
Thank you thank you thank you for your honesty. I thought i was the only one to feel this way and have felt so guilty for a while. I also have times when I don’t like the person my husband has become. It is such a relief to know I am not the only one.