Hi everyone, and thank you in advance for reading.
I titled this ‘depression’ but I’m not sure that’s accurate - it’s just a starting point.
I’ve been caring for my husband since he was diagnosed with PD in 2015. Thankfully the progression has been quite slow and it’s only recently that the physical and mental deterioration have become very obvious.
Like half the country, my husband has suffered from a couple of chest infections over the winter and now has a persistent cough and wheeze that won’t shift. (He’s had 2 courses of antibiotics and a steroid in the past 6 weeks).
He suddenly has become very withdrawn, having been chatty, funny and gregarious all his life. I’m struggling to deal with the silence in our home. No chat, no banter. Yesterday he sat watching tv with the volume off and I’m having to repeat every 4 or 5 times to get any sort of response. He seems to have no interest in going out, going to the beach where we live, doing any of his recommended exercises - and I’m finding this very difficult to cope with.
He’s adamant that he’s not depressed, and says he isn’t conscious of being any different to usual.
Should I just let things sit, and both take things easy for a few days? Maybe his lethargy is a consequence of his infections? I just dont know what to do but I feel like I dont have the energy anymore to keep trying to bolster him and lift his spirits.
Thank you all for listening, and any advice will be very welcome.
PS - he was previously on Citalopram drops for a year or so but his GP stopped them at the start of December as he seemed to be doing very well.
Good afternoon Emboc … I think this is certainly something I would mention to his
Parkinson’s nurse or his GP straight away. It could be depression or anything really.
It needs looking into.
Best of luck.
Steve2
Hello
So sorry to hear you are going through this
But I understand completely as my husband is exactly the same
He was diagnosed in 2016 although was told he probably had Parkinson s before that for a few years.
He now sits in the chair all day, doesn’t read and doesn’t watch the TV much either
He has no conversation except about his meds.
Like you it takes several attempts for him to answer me so I often give up talking to him and in fact when we sit at the table in the evening for our meal, he just eats like an automaton with his head down just shovelling food in.
Again like your husband he does not do his excercise on a regular basis, just occasionally when I force him.
I have a very good circle of friends and I just go out a lot and talk , and laugh, with them.
At the moment I am able to leave him on his own but am dreading the day when I cannot do that.
It would seem to be the disease itself causing all this but I also think it’s to do with type of personality before the illness.
My husband was always quite happy to sit in the house rather than socialise so obviously this has got worse.
Lockdown didn’t help anyone with that.
I’m sorry if this is not a lot of help but like you, I try to help and suggest things but I can only keep pushing for so long
It would seem that they are both about the same time into this blooming illness and perhaps this is the natural progression
I have to say the medics and drugs are not much help
I do hope you have a good social circle to help you as I think that is the besg therapy for us
For our poor husbands it must be hell but we have to keep going or else they’re in a worse mess
best wishes to you
Hello Emboc and KK1
Your posts do indeed show a lot of similarity so hope you won’t mind a joint reply. I have Parkinson’s myself but can entirely understand how distressing, frustrating, angry and a 101 other emotions the behaviour of your respective husbands generates in you both. If I may however, I would like to offer a view from the perspective of one who lives with Parkinson’s. I would stress that what I write is only my opinion, nothing more and you may or may not find it relevant to your own situations - that is for you to decide. What I write I freely admit, will make little difference to either of you in any tangible way but maybe something will resonate with you, that perhaps may make you think a little differently.
KK1 you mentioned pre-morbid personality and I happen to think this has a lot to do with how people manage a condition like Parkinson’s. You won’t need to read many of my posts to know that maintaining a positive mindset is the single most important tool I have available to me but that is borne out of a naturally positive persona. My work background also means that I do not see disability generally as being the end of the world. That is of course a very simplistic view of something that is actually quite complex but for the purpose of this response it will do.
I believe that it is my positive mindset together with a well established exercise routine - I use most of my PIP to fund a personal trainer who comes to my home (the sessions are a regular entry on my calendar so they happen even on my less good days) - have kept me as well as I am 14 years on from my own diagnosis.
I am acutely aware however this may not always be so. The sorts of symptoms your husband are displaying - apathy, reduced interest in everything, an increasingly socially poor life within a shrinking world and seemingly not to mind, are very common in people with Parkinson’s. I don’t know this for a fact as it is not something that I have personally experienced but my perception is that whether or not the individual is aware is perhaps not the point - although my suspicion is that most are not self aware - rather it is that it just feels normal and they don’t see anything wrong with sitting in a chair all day, or being monosyllabic in conversations exacerbated by not having the energy to do anything about it even if they wanted to. I might well in time be one such person myself. I’m not necessarily immune to developing such traits just because at the moment I can remain positive.
Since the time I received my diagnosis of fundamental importance to me has been not to become a burden on my family. I have to accept however that may well not be in my gift to give and that I cause the same sort of heartbreak, anguish and frustration to them that your husbands do to you. That is something I have to live with and not worry too much about since it is a future over which ultimately I will have little control. I can only hope that should that be my future, family and friends will remember that I wasn’t always like that and I am not deliberately trying to create such problems for them.
I do not write like this to be critical of anything either of you have written or to make you feel guilty in any shape or form. It is simply to explain how it seems to me. As I have written several times here on the forum, there are no winners with Parkinson’s.
Tot
Thank you for your support and interest, Steve2. The Parkinsons nurse doesn’t really have anything to suggest, other than trying an anti-depressant. We’ve already been down that road and it worked temporarily. My husband doesn’t think there’s a problem and says he’s perfectly happy. It’s just so sad to see this happening. Maybe I just need to accept that this is the way it’s going to be for a while. Funny though, when the weather changes he seems much happier and re-energised. Perhaps I’ll need to learn to go with his mood and not put pressure on him to be ‘upbeat’ if he doesn’t feel like it.
Hi Tot and KK1,
One of the beauties of this forum is the chance to share and view from the perspective of both the carer and the person with PD.
It’s comforting to hear of your experience, KKI, and to know that I’m neither alone nor imagining things. Unfortunately, I’m not longer prepared to leave my husband on his own as he’s had a couple of falls (thankfully none for a year now but perhaps that’s due to my hyper-vigilance, possibly this isn’t a good thing either.) He won’t consider having anyone in to “sit” with him, insisting he doesn’t need that yet - and I can understand that completely. My compromise since Christmas has been to take up morning swimming with a couple of friends, while my husband is more than happy to lie on in bed till I return Works brilliantly for us both.
Tot, as always, you give great insight into living with PD and you have a wonderful attitude to maintaining your independence and fighting this horrible condition. I realise that not everybody can deal with it so well. Your personal trainer is a great idea - and perhaps is something my husband an I can look into.
Thank you both for your help x
I’m sorry to hear what you’re going through. It sounds incredibly tough. My dad had Parkinson’s, too, so I know how hard it can get. Infections can make people feel tired and withdrawn, like all their energy is gone. Have you talked to his GP about these changes? Sometimes, meds for Parkinson’s need adjusting. Also, joining a support group might help. Talking to others in similar situations can be helpful. Something that helped my dad was CBD. When he felt evil, he used Nexus Smoke CBD vapes, and it eased some of his symptoms. Maybe talk to his therapist about this option for your husband. Try some small, accessible activities that don’t take much effort. Little things can sometimes help lift both your spirits. And don’t forget to take care of yourself too. You’re doing a fantastic job, but needing a break is okay.