Hi Anjo, this is the first time I have been on this forum for 3 years. My husband was diagnosed 7 years ago. You are describing just how I felt and how my husband was behaving. It is so awful, you just feel that no one understands. I really empathise. I went to our PD nurse about it and they changed his medication around and did some cognitive tests which mostly showed up memory problems. It seemed to get better for a while but has slowly slipped back. Now we are back where he was. He is cold , lies all the time, almost to a point that he lives in a different world to me, even though we have done more or less the same things. He swears black is white, cant remember things, and gets very angry very easily. Accuses me of lying, when I try and steer him back to the reality. I feel he is trying to keep going even though he must know his memory is failing him. He falls asleep at the drop of a hat, even in the middle of eating a meal !!
I have sort of given up on it being any different now It has almost become the norm. I just handle it. Mostly by not arguing or pushing him to listen . I just say Yes dear! The very hardest part is that sometimes he is much better , almost himself but it is only for a little while, ie a few hours. He usually can be nice to others as well , which hurts.
I do hope you have find something that helps your situation. It does sometimes make you wonder why you stay with them, but I personally just cant leave him, that feels too cruel. I sort of assume that this is only going to get worse??? oh heck.
Is anyone else out there in the same situation as Anjo and myself.
Hi AMEve, I just wanted to let you know that I'm in the same position with regard to my husband's personality changes. From what I've read here from different people's postings it seems we're all in the same boat. Some poor people having to cope with more than others. However it's always truly awful to watch the one you love disappear bit by bit as time goes by. I was feeling sorry for myself earlier and probably still do to some extent, but like the rest of you brave and wonderful people I will get up and carry on. It helps to have it confirmed that he can't help it, even if deep down I know that. Sometimes we just need to talk to others who understand. I don't think friends or family always get it. They're so busy being concerned about the impact of the illness on the Parkinson's sufferer that they forget the impact on the carer's life and well being. It's good to let off steam and not have to feel guilty. Not sure I have any thing very useful or constructive to say, as I'm struggling my way through it every day. Just helps a bit to know I'm not the only one, and these personality changes are indeed part of the illness. We've been married for 44 years, so I just try to be grateful for the lovely man he has been whilst he could. It is a cruel and disgusting illness and most people don't see beyond the tremor. Good luck to you all.
Hi my husband is 49 and was diagnosed 4 years ago. He is a very different person to the man I married and have at times thought about leaving but I never would. He refuses to go to any local groups with me or for me as its not who he is but I am struggling so much. I have had a visit from a lovely lady from Parkinson's and she listened and gave advice, trouble is most needs him to ask which of course he won't. Our friends have slowly backed away and I feel so alone at times. We have 3 children age 16, 8 and 9 and they have very busy lives I also work nearly full time and I'm so tired and I would just like my husband back.
I'm very sorry to read that you are struggling and feeling alone. As Fluffster and many other members have mentioned, the impact on the carer is too often misunderstood and overlooked by friends and relatives who are not aware of what living with Parkinson's is really like, but remember you are by no means alone in this.
I'm sure you'll find plenty of support from other forum members who do understand your situation, but you can also attend local group meetings, even if your husband doesn't want to come along, and call our helpline on 0808 800 0303 (open Monday-Friday: 9am-7pm, Saturday: 10am-2pm) for emotional support and advice on how to cope.
I can sympathise with you both K833 and Fluffster, PD does without doubt become between a sufferer and carer, and we are just starting to go through that stage. I have PD (coming up to six years) and my lovely husband is my soulmate and carer, we have been married for 43 blissfull years,until the last 6 months, when things have lead us to argue ending up in tears. But we have to stay strong because of our marriage commitments and hope we will get through these bad times,.So all those who need strength and guidance to cope I wish you well.
Its a terrible situation some people find themselves in. My wife has PD and has changed a bit but i keep telling myself to be positive and be strong and i know its easier for some than others.For me we are managing ok i tell her i love at least every day, She has good days and bad and occasionally water infections that can wipe her out for a couple of weeks......so this is me cant sleep having some honey jacks and posting on the forum.
Happy new year to you all and lets hope the new meds in the pipeline work
For most of the years i was with my girlfriend she was ill, i loved her for her i did everything almost for her and then i became ill she loved me for being me,we hadn't changed,we were ill, we cared for each other & comforted each other, love the person, cherish every moment, life is so fragile.
Hi Billywizz I also can't sleep some nights and end up with a hot milky drink and on the forum reading my posts. I agree with you it's a terrible situation we find ourselves in, we are coping to a certain extent, but it's very distressing at times and it hurts me for us to be this way. Deep down we love each other but it's so frustrating what is happening.
Hi sea angler We do cherish every moment we can, we have been together too long not to, and as you say life is so fragile
Hi I understand what your going through my husband is exactly the same. I have tried everything and ever one I can think of but nothing helps. I'm now treating water with our relatonship ( been together 35 years married for 29). He goes through times when he accuses me of having affairs with everyone and gets extremely verbally abusive. This is not the man I know who was a true gentleman where women were concerned but I refuse to give up on him.... he's not getting rid of me that easy. I think the best thing is to keep strong and go with the flow. It doesn't work for everyone but it helps me ☺ x
Hi there
I am so glad I can across this forum, I wasn’t sure What was going on.
I live in Australia.
My husband is 37 and I and 35 he was diagnosed about 4 years ago and in the last 6 months or so I have been thinking that my marriage wasnt going to last as my husband has been changing and I have 2 girls 12 and 16 and we also have his kids half the time which are 11 and 14, and what’s been the hardest is with the kids he seems to be fine with his kids but with mine he seems to find the most petty little things to get annoyed about with them and if I mention his kids do it to and it’s ok that’s kids for you he gets very defensive and upset at me that I am picking on them and want them in trouble, my head has been spinning with the way he has started accusing me of these things all the time and even with the things he says to be there so petty and small but he will say them all in the morning before I go to work and then I will be annoyed when I got home but to him nothing was wrong and he doesn’t get why I am upset, and it has been happening more and more it started with him becoming very clingy he hated me going to the gym or horse riding on the weekend and would say I don’t spend anytime with him so I have quit both but he still complains when I have to leave and go shopping and he doesn’t want to come, the thing is I don’t go to gym after work anymore but I come home and he is just asleep on the lounge until I cook dinner and then eats and then goes to bed while I am doing the dishes, so it’s not like he would know if I am home or not… I am sorry I am kinda of venting, I haven’t had anyone to talk to this about but it’s been getting worse and my kids are starting to hate him because one minute he is the funny easy going man we love and then the next he is upset at everything we do.
Also have had him having the dreams where he punches and kicks and swears and doesn’t remember in the morning. As much as I don’t know how we are going to get through this and how sad it is for others it was good to read this to know it’s not just us.
Hello Kat11, I am so sorry things have turned out the way it has between what I see as a loving family. I am afraid Parkinsons has reared it’s ugly head again by trying to come between another loving family, the trouble is it can change a persons thoughts immensely. The best thing in the first place is to contact the Parkinsons Nurse or the Neurologist about your husbands medication and have it checked to see if he can be put on other medication. I don’t know if this will help but it’s worth a try. From my experience our thoughts are sometimes not our own. Another thing you could try is phoning the helpline shown at the top of the page and speak to someone or they will point you in the right direction.
I hope you get some help and wish you all the best, please let me know of the result - take care sheffy
I’m really sorry to hear that you and your family are having to go through this. Unfortunately, Parkinson’s can create unfamiliar traits in the person with the condition which can be very challenging to deal so you definite;y get our full empathy with this.
