Supporting an already Depressed Partner through Cancer and Parkinson's Disease diagnoses

[Former-Member]

Hello again @outlander 

How am I tonight? Good question and not one I can easily answer.

I've been all over the place this past week with regards to my brother and SIL and losing their baby.

And hubby has also continued to go downhill both mentally and physically through the week. Was hoping to get answers and support for him when we saw  the neuro yesterday. But that wasnt to be. I just feel like Ive been left to deal with things on my own. And I simply dont know whats best to do. Nobody knows whats wrong and nobody seems to want to take the time to find out.

@BlueBay  I promised to tag you on this thread, which I did on the post earlier tonight. But I think the tags in the first section did not work, so you probably did not get it.

@Peri @Starta You have both been very quiet lately. I hope things have improved for you since I last heard from you.  @Maggie  @Former-Member 

@Shaz51 @Faith-and-Hope @Former-Member @Zoe7 

[outlander]

i got the first tag but not the second when you edited @Former-Member it is very quiet on the forums tonight though.

i can imagine it would be very hard for you with so much hurt and uncertainty too. i am not surprised your all over the place, its very understandable

[Owlunar]

Hi again @Former-Member 

I'm sorry to hear about your brother and SILs loss - and yours too - I understand - having had losses myself - it is really hard to deal with and I often wonder about such things - 

I can only hope that physical health can return quickly - the emotional side will take its time - grief work does and it can be hard if people try and brush it aside - as some people thoughtlessly do - I think we all need gentle and loving support and equally - time and space - for such things

It's rough you have your husband going downhill mentally and physically during the past week and also people not really knowing what it is - such a worry - and not good that you feel as if you are left to cope with this all by yourself - fact is - you probably are all alone with it - esp if your husband took care of his part of your family life. It's not easy - I hope you can find support on this side of the forum - I don't post here often myself so I don't know the stories

I wish you the best though and send some hope if possible

Dec

[Owlunar]

Aw @Former-Member  - I just read your brother's story about his little girl - all the "if onlys" - I know about them - they don't do much good but maybe it releases some of your sorrow to go through them - and I understand - I am a bereaved mother myself and know the despair - it's heart breaking

And then to have an unplanned pregnancy - to then accept it with joy only to lose it - yes - heart-breaking - alas - it does happen - and it's among the unanswerable issues of human life - some people really get the wrong end of it all - and I send you and your brother and his wife my best thoughts - it is a hard time indeed

And your husband - yes - it seems your husband has cancer and Parkinson's along with depression - what an armful of stuff to have to deal with!! - and to wait and wait to see a specialist only to wait and wait again - cause no one seems to know - really hard yards - I hear you

Are you in any kind of support group? You really do need support at this time while you support the rest of the family - no wonder you feel alone

Dec

[Former-Member]

Hello @Owlunar and thanks so much for visiting this thread with your lovely words of wisdom and insight. I am lucky indeed. I have a thread in the LE side of the forums too of course, since I have a battle with PTSD personally. And I tend to switch between the Carers and the LE side of things as things seem to dominate one way or the other.

Yes its really awful about the loss of my little neice. My brother suffers PTSD as a result of the accident. He wrongly blames himself for her death, after all he says "I was the one driving". So its hard for him. Then this short-lived hope of new life with the unexpected pregnancy. His wife is 45 and he is 55. Only for those hopes and dreams being dashed so cruelly. I am so terribly sorry that you have experienced similar heartbreak. No words are really appropriate are they?

Yes my husband is an alcoholic and has PTSD from Vietnam war service. So thats his baseline, with anxiety and severe depression at times. Add in a diagnosis of Stage IV Melanoma cancer which spread to his lungs some 18 months ago. Then a diagnosis of Parkinsons Disease late last year. All of those diagnoses add to his depression and SI. He also spent two long stays in hospital last year, the latest time just on 12 months ago. He had Encephalitis (brain inflamation) then, only it took them nearly 3 weeks to diagnose it. Apparently it is a very rare reaction to the Immunotherapy he was on to treat the Cancer. So he has been through a lot in the past 18 months. And me right along with him.

The neurologist who is now treating him for his Parkinsons, doesnt want to know anything about the possibility of encephalitis. He agrees that its highly likely, given the symptoms. But said to see the neurologist who ended up treating him while in hospital last year. Its very hard to properly diagnose, and I guess he just couldnt be bothered. Very annoying.

No I'm not in any support groups. But I have here, where the people of the Sane forums have been such a big help to me. There are times I really need to release my frustrations, fears and sorrows. And here has become that place. Both this side and the LE side. The other issue right now is that I normally have my lovely clinical psychologist as a support, but she has been away on a family holiday. I usually see her at least monthly, but she emails in between visits. So I dont currently have that. So I guess I am feeling a little more alone right now than usual.

Again thank you so much Dec. I really appreciate that you took the time to come and offer your understanding and support here.

Sherry 💕🌼

[outlander]

@Former-Member

[Owlunar]

Hi @Former-Member 

Thanks for sharing your story and your brother's story - things like the death of a child or children, war-related PTSD and other issues are really hard to live through and I often wonder if there really is any such thing as closure in the lives of those living with such trauma - maybe in time there comes a sense of peace that these things are part of life and no one is to blame - I hope so.

My son died well over thirty years ago now and left a lot of trauma behind - he was so young and what happened was so senseless but you are right - there are no words of consolation - no right words - except to say that - to share the uselessness of words at times when words are all we have - 

Your brother is not at fault - of course you know that - it sounds like a terrible freak accident and all these little bits and pieces came together like a perfect storm and took a long life. I felt terribly guilty after my son died to but a wise person told me that the people who feel the lost guilt need not - those who don't feel guilt probably do - for some strange reason the world gets mixed up at times and I really feel for your brother and his wife losing a second child - another pregnancy is something not likely to happen and that part of their story is over and has left a gaping wound - 

War related PTSD is something else again - I have no idea how someone would cope with that - I was born during WW2 and my early memories are mixed up with the war in a way it has taken a life time to sort out - actually going to a war - I can't imagine that - your husband has a lot of issues to deal with - past and present - and this is on-going and sweeping you along with it - it's a struggle - so much is on you to hold things together

It's wonderful to be acknowledged - I am happy to give my time to help anyone else with their day-to-day struggles - I have lived through a very dark time in my life too - many years ago now but it did last for a long time and back then I could not see the hope of any change or light at the end of the tunnel. I was very much alone when it came to personal contacts but I was lucky when it came to professional help and I always had a bright light inside me that did flicker at times but never went out. Also - against all odds I had a baby girl who is a middle-aged woman now but is the rose of my life - I thank God for her constantly - she is a miracle

So I guess when I feel as if I can help I like to give something back to the universe - when I was so blessed to somehow survive those dark years I want to pass that on and it is great indeed to have that acknowledged

Thank you

Dec

[Former-Member]

Hello dear @Owlunar .  I have seen so many of your wonderful posts around the forums, you really are wonderful for all that you do.  You would make another wonderful Community Guide, if you were interested?

I am so happy for you that you have your daughter .. whom you call the Rose of your life ... your miracle.  Thats so lovely.  Speaking of roses, I arranged to have a delivery made to my brother and his wife.  Since I cannot be there in person, I ordered a special memento for them.  Its a preserved red rose, 12 inches tall, with 24 carot gold trim.  Something for them to keep and to remember their two lost daughters.  @Faith-and-Hope @Zoe7 @Shaz51 @Former-Member @outlander @BlueBay @Peri @Starta @Former-Member @Sophia1 @Maggie  - some of you offered advice last Monday in another thread about how I could do something for my brother and his wife after the loss of their baby. Taking some of that advice, I organised this special keepsake rose.  It would have been their other daughters 15th birthday at the end of this month, had she still been alive.  So the preserved red rose with gold trim is for both their lost daughters.  They should get it today and I really hope they like it.  It was quite expensive ... ouch. 😵

As I mentioned in my post a couple of days ago, I had to settle down a bit before writing about my hubbys apt on Saturday with his neurologist. It appears that you need a different neurologist for every separate neurological disorder!  Or at least thats what this particular one seemed to intimate.  Here's what happened .....

We finally got to see my husband's neurologist on Saturday, after waiting the 5 weeks to get in with him again. He only comes up here 3 days once a month.  What a complete and utter waste of time it was!  We drove an hour to get there, and we were in there for less than 10 minutes.  We arrived early and were called in 10 minutes before our appointment time. We were ushered back out the door again, before we were even due to go in.  I was staggered and utterly baffled by his lack of care and his complete refusal to even try to help.

He asked hubby how he had been feeling since last time we saw him in January, at which time he'd increased his Parkinson's meds.  We explained that he had been travelling fairly well until about 2 months ago, at which time he took a dive both physically and mentally. He asked about symptoms he'd been experiencing. We told him. To which said that they are not symptoms of Parkinson's Disease and that clearly some other neurological issue is playing a part. Ummm ... yeah ... I knew that.  Thats why we came to see him, a neurologist.  He said it sounded as though the treatment he has him on for his Parkinson's Disease (PD) is going well.  He said to make another appointment to see him in 6 months time and he would review his PD again.

He said that the symptoms he's been experiencing is very likely related to a recurrence of the immune mediated encephalitis, but that he should see the neurologist in the city hospital who treated him last year.  I accept that it's difficult to accurately diagnose and presents very differently to a typical encephalitis case.  But he basically wiped his hands of the whole thing, and just didn't want to know.

He knows he's the only neurologist who consults within 2 hours of here.  He accepts that hubby likely has a serious neurological issue simmering away, but he's not interested in treating him.  Not interested in doing any difficult research, not interested in doing investigative tests to find out exactly what's going on.  He's just wiped his hands of it entirely.  Clearly he is only interested in 5-10 minute easy consultations and handing out scripts. Easy money for him.  I was so annoyed.

He suggested we get in touch with the other neurologist asap as we will likely need to wait over 3 months before we can get in.  And then he said in the meantime to keep increasing the anti-inflammatory drugs that were used to treat the encephalitis before.  The ones which make him bloated and angry.  The drugs we have spent the best part of 12 months trying to wean off.  It seems as though we are back where we started almost 12 months ago.  We don't know what's going on or why.  And nobody seems willing or able to take the reins and lead us in the right direction.

Meanwhile hubby had a half decent day yesterday.  But a dreadful day the day before, where he was getting constant sharp stabbing pains in the head and all the other things which that seems to stir up.  Today is shaping up as another bad day. He was up briefly for breakfast and medications, back up for lunch when I woke him, but has been in bed all day otherwise. 

We see his GP on Thursday.  Perhaps the neuro we saw on Saturday will have told him something more than what he told us.  Who knows?  I was just so flabbergasted and disappointed that the neurologist took so little interest or care in an existing patient of his. So once again it's been left with me to make decisions about ongoing care and meds.  I'm hoping that his GP will take a more active role now that he knows the neuro isn't going to be of any immediate help.  He was just hanging back in the hope the neuro would take charge. As were we, for that matter. There's been the perception that we were just keeping him afloat until such time as the neurologist took charge and fixed things. Clearly that isn't going to happen. 

So once again ... we wait. Meanwhile hubby's mood has plummeted, he is again talking along the lines that life just isnt worth living. Saying he cannot go on like this much longer.  Clearly something needs to happen.  I just dont know what.  I hope the GP has some ideas on Thursday.  

Sherry 😢💜

[Former-Member]

Do you feel comfortable talking to the GP about what happened with the neurologist @Former-Member?

[Former-Member]

Yeah I guess so @Former-Member . Would be easier without hubby there though, because I can be more honest about things then. Hubby gets really angry with me for bringing up things he doesnt want them to know. But I will certainly talk to the GP about how disappointed we both are that his neuro couldnt be bothered with doing the research necessary to properly diagnose and treat him for anything other than Parkinsons Disease.

Sherry 💜