Need to talk..


#1

Hi, My lovely hubby was diagnosed 2 years ago with “possible” Lewy bodies dementia and Parkinson’s syndrome…and for the most part we’ve just got on with our lives…him spending what seems like every waking hour checking symptoms on good old google…which leads to lots of…this is me…I’ve done that…or …bugger is that going to happen… I on the other hand have my head firmly stuck in the sand…I DONT want to know just yet whats going to happen…my hubby is only 55…so our future plans have all been shot to hell…and unfortunately hes turning into someone who is no fun to be with…he stopped drinking…we go away in our motorhome where we used to enjoy a few drinks and a laugh with friends…nowadays we still go away…I still drink…but he doesn’t seem to find joy in anything…and this past few months he has started to talk to me like I am something that he needs to scrape off his shoe…I have never felt so alone…hes not the man I married 33 years ago…and I dont know at this moment in time how this will pan out…our kids are shocked at how he speaks to me…I try to explain its the illness yet I hear him talk to other people and hes ‘normal’ none of the argumentative tone he uses with me…I’m sorry for going on …I just dont know where to go with this and its really getting me down…
If you read all this many thanks x


#2

Hi Paddi and welcome. I don’t know about the Dementia part of your husbands diagnosis but with Parkinsons it shouldn’t be an instant change in life style more a case of carrying on as you were to the best of your ability. Yes, things will change over time but not the way you describe(I was diagnosed at age 58). When I had the tremors my Doctor recommended that I have a drink to help calm them down but that wasn’t possible(only at weekends) as I was a lorry driver and so was unable to drink in the week. I occasionally get a little snappy with my wife but it is short lived. If you go on Information and Support you may be able to get more help and advice there. I sincerely hope things improve in your life, take care.

Les


#3

Hello Paddi

Virtual hugs coming your way, I do understand how you feel, it can be very hard at times especially if you’ve previously had a close relationship. My husband hasn’t been diagnosed with dementia (yet) but he does have cognitive issues that his consultant told us are typical of PD. Unfortunately they are more severe and have a much bigger impact on our daily lives than most other people realise (our daughter is an exception). My husband is mostly in denial about them even though I now have to plan & organise things that we previously shared, and at times stop him doing things that are potentially dangerous. He has been verbally quite aggressive towards me if I dared to mention them but never to other people. In a calm moment he told me he was simply frustrated but I think he is also very frightened - as am I sometimes. He was previously always a very kind and gentle man and I try to remember that.

You are younger than we are and that must be exceptionally hard as we have already done many of the things in early retirement we hoped for. Have you tried talking to your GP? I had never discussed personal issues with a GP before but I went to see ours on my own a week ago and told her how things really are at home, and how difficult it is at times. She was incredibly supportive even though I didn’t want her to do anything and I feel a 100 times better knowing that she knows how things really are. I have also recently looked at the info on dementia on the NHS website and am impressed by how good it is, with lots of helpful information about how to raise the issue.

Lewy body dementia in the early stages is quite unlike other dementias such as alzeihmers. My lovely mum in law had it which is why I strongly suspect my husband does too, I recognise the pattern. It is much harder to deal with and accept in my beloved partner unsurprisingly. Whatever you do, don’t bottle things up, you must find someone you trust to talk honestly to and your GP may be a good place to start. And you can, of course, always vent your feelings here.

Take care - you matter too.


#4

Hi @Paddi,

I’m sorry to hear that you’ve been experiencing these issues in your relationship, this can’t be easy for you and your family.

When someone has Parkinson’s, it’s common for relationship roles and the dynamics of a relationship to change. This can be difficult if your relationship was very different before. There’s a lot of help available to you to help you both overcome the challenges you’re currently facing in your relationship - you may want to consider speaking to a professional like a therapist or a Parkinson’s nurse who can offer you more support.

You can find more information on this on our website here - https://www.parkinsons.org.uk/information-and-support/being-relationship

We are always here if you need someone to speak to so feel free to speak to one our trusted advisers via our helpline on 0808 800 0303. We’re available from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

Hope this info helps and that you start to see some improvements in your relationship soon.

Best wishes,
Reah


#5

Hi Paddi

I can understand how you feel. With me it’s the opposite way. I have the PD and my husband is the “googler” - he keeps bringing me bits to read, or suggesting things I should avoid, or do, so I know how frustrating that can be. Why not try to find something that you can do for yourself that you will enjoy, and leave him at home? It sounds as though he will find plenty to do on google. You need to make time for yourself to get some enjoyment out of life - join some sort of group, or a creative class or go to the cinema. You definitely need another outlet for yourself.

Good luck and best wishes

Audrey


#6

Wow.
I can’t help but feel for you.
This blessed illness affects us all in different ways.
Personally I know I have become more laid back and easier to manipulate. A pushover.
Anything to avoid confrontation.
Others go the other way. Become more aggressive.
I find I like to be on my own more.
We all have our own ways of coping.
If your husband gets verbally abusive withdraw yourself from the situation. You don’t have to take it. He’ll soon get the idea.
You just have to find what works best for you and your family.
Regards
Hubby


#7

I am the Parky sufferer and my escape from home life as such is exercise and so I walk to town 6 days out of 7 to fetch the paper(the 7th day is when we go shopping and I push the trolley round the various supermarkets). Also I play Flat Green Bowls and am a member of a local Club and play in matches once or twice a week plus we have a Club Day on a Tuesday afternoon and a Social evening on a Thursday(both Bowls events). I do the hoovering everyday for my wife, something I can be trusted to do without messing it up !! So there is escapism from one another’s company if you look hard enough. As it is Paddi, your husband seems to have developed into a Jekyll and Hyde type of character. I sincerely hope that there is a way for things to improve between you both, 33 years is a lot to give up on. Take care of yourself.

Les


#8

That made me laugh Les - “hoovering - something I can be trusted to do without messing it up”!

Something we’re learning - make the most of what you each have regardless of which side of the Parky partnership you’re on. Sometimes you do just have to laugh - like putting the bins out on time but forgetting the small point of putting the rubbish in them first!


#9

Making light of my predicament to those around me is something I have always done, it is no good being a doom and gloom merchant thinking i’ve got this disease how am I going to cope. Just get up, look it in the eye and say I will do my damndest to defeat you, I am going to live my life my way to the best of my ability. Always think and look on the positive and if this attitude rubs off on others then my job is working. Yes, we all have different aspects of the disease but at the end of the day we are all in this together so let’s be positive together.

Les


#10

I live on my own so when I need to talk it is the poor cat next door who cops it. I agree with those who have said you need to have something to go to outside the house and without your husband. He needs the same, but somewhere else. A good relationship is supposed to be based on shared interests, don’t they say? Rubbish!! Find something that gives you a break and then come back relaxed. Easily said, best of luck finding something.


#11

PS

I just found Hubby’s poem on another thread --Today I cried for me – sometimes just sitting and howling because someone else does understand is an enormous help.


#12

Hello,my wife talks to me like that too,but she’s disabled herself and I’m her carer,no way to talk to someone who’s doing their best to live a life with Parkinson’s,kidney problems and sleep apnoea is it,I’ve told her if she don’t talk to me better,she can look after herself,bye.


#13

It can be hard to accept in the early stages. Emotions are all over the place, it is a journey that requires support for both of you. I suppose it’s a new learning process too, however there is hope, I have written about many challenges and experiences it helps one figure it out. I now know I have a lot of insight which also has helped remove a lot of symptoms. Main thing is, getting diagnosed can feel the end but it is not, I’m living proof life goes on and it can get better. Trust me, big hug to both,


#14

Ps there’s no excuse for verbal abuse, no matter how bad things get. Respect is respect!


#15

Paddi

Learn from my mistakes
sorry to hear about your husband. A couple of years after i was diagnosed with parkinsons i separated from my wife. My behavior was the same as your husbands. In the past i was always happy and fun to be with. I can sympathise with your husband because you never know what will happen next. i spent hours every day gooling about parkinson’s some of it was positive and other sound like a death sentence.I neglected my wife and became a bore and a miserable sod, I did not feel like going out and was always worried
that people would stare at me. I became frightened of the dark and heights.

I was always very sporty and out going
One day my ex wife said to me why don’t you try concentrating on the hobbies that i can do and not worry about the ones I can not do. I now do Yoga,snooker,quiz nights, argentinian dancing, domino’s , massage , mediation and i plan to go back to jujitsu ( martial arts ) I find that the symptoms tend to go away

The reason i think is that when i am at home alone i get depressed about my condition. Your husband will have good days and bad days so make the best of it. At least we have 2 arms and legs

Advice to your husband
don’t make the mistake that i made I lost the woman of my dreams to my parkinson’s and I miss her terribly. I now live on my own and totally blame myself. Your wife is being supportive and caring and would love to have you back. Try to be positive and remember she will be suffering as well.
I spoke to my ex wife recently and she said that splitting up was a mistake. But it is too late now I wish I would have reacted sooner

John


#16

Paddi, I was quite moved by your posting and apart from wanting to give you a hug, I will throw in a thought, as a 58 yo man with PD. Possibly he wants to push you away as he feels terribly vulnerable and knows that you see his vulnerability. So pushes you away to hide the way he is feeling. I can’t tell you how you should react, but please look after yourself and get some support. And don’t feel that you have to cop abuse, you don’t! If he hurts your feelings, tell him, and that gives him the chance to think about how he is behaving. Hope things get better soon


#17

Hi Paddi

I can totally relate to what you said. My partner has pd and also advanced glaucoma which meant his driving licence was taaken away. Hard when you drive for a living. I came on here today because i am totally at a loss to know how to cope. He is so horrible now and i am really struggling. He cant see any future does nothing all day i am at work fulltime so he is on his own which i feel guilty about… I feel guilty if i spend time with my daughters and grandchildren but he never wants to join in. I dont feel we have a relationship anymore just go over and over the same ground him talking about his disease and the meds he has to take. All the docs/pd nurse/consultants do is add another tablet which dont seem to make any difference. Maybe we can chat and help each other xx Steph


#18

Hi Paddi I really do feel it for you, you don’t say how old your children are. When I was diagnosed with PD it was 2010 and I made the mistake of reading and looking at DVD of how PD progresses that really upset me so I took a deep breath and thought, first it is an illness so get your children on board as I told my children who were not children any more but adults then came my grandchildren (what to tell them) you will find all leaflets on Parkinson’s uk they are free start with the first ones what is PD they also do a little booklet what should I tell the grandchildren, and don’t make apologize tell your friends what your hubby is like and why (only tell them what you want them to know) and if you can find a local PD group give it a try (must admit I only went once to one near me) I was speaking to a friend the other day, we were getting ready to bowl (green bowling) and I had to take my meds, oh on the hard stuff are we said my friend my answer I have to take meds for PD Oh! I didn’t know as you don’t shake very much do you? PD is not all about the shake’s every one who as PD as different symptom’s I also do Tai Chi not as a martial art but for movement. Even is any of these answer’s help a little then that’s good. Do keep in touch with this page all of us will try and help.


#19

Hi Paddi,

In my case, I am the sufferer and my wife is rhe carer. I was diagnosed eight years ago, but I am convinced that I had it for at least five years prior to being diagnosed by a neurologist.

Your story makes my heart bleed for you Paddi; it is easy for people to say what you should and shouldn’t do my dear, but when you love truly somebody, as much as you love your husband, it isn’t so easy to take their advice. I am not saying that I condone your husband’s manner in the way he speaks to you,or that you should confront him about it. Unfortunately, you are in a catch 22 situation, you’ll be damded if you do, and damded if you don’t.

I have read all the replies and must say that Reah is the one person, who has give you the best advice. If I was in your situation, I would be inclined to follow her advice, but whatever you do don’t get into a situation whereby you and your husband can’t communicate, and the last thing you should ever do is hold the nasty events against.

I made a mistake three years ago, and my wife has held it against me ever since, any physical relationship that existed between us is now dead. Yet she tells me constantly that she loves me and I am her world, however when I try to bring up the subject of our love making she just gets angry and refers to it as sex, which hurts me because I have never regarded our life in the bedroom as having sex. I have always preferred that she gets the maximum pleasure even if I get very little.

Take care and I hope your husband wakes up soon to what he stands to lose.
Prof.


#20

Dear PADDI,
My wife has a very similar problem to yours, because of my behaviour and I believe it would be in your interest to have a conversation with her. PD is a vile mental illness which I find so difficult to fight, particularly OCD, the elements which my wife has great difficulty dealing with, also she feels alone because I find making conversation difficult. We live on the Costa del Sol, but use the Vonage low cost telephone service for calls to and from UK, so a call to us would be at your local rates. Please consider my request which I believe will be beneficial to both of you.
Yours sincerely,
WILLYNILLY