[tanyaParticipant]

Hello,

I've been reading this forum for a couple of years now and at the start posted on newcomers back in early 2011. My dad has had a time of it since then.

After initial diagnoses he started CTD which he responded to really well and had a good run at normal until late 2012. So much so that I actually didn't visit for a year as he resumed his preferred lifestyle of being in the local pub. I resent driving 130 miles away from my children to find out he is in the pub. (cut a long story short I'm currently battling some childhood issues on top of everything).

Anyway that aside, he ended up missing appointments and when he did have a BT his calcium was up and was admitted on 10 dec. Started on velcade and discharged mid Jan. Been in and out with infections, falls, etc about 12 times since. In December he was poorly but able and now he lives downstairs, spends all his days on a profile bed, has a commode, can't walk with out sticks but only a few yards. He has carers in 3 times a day. O/T visits once or twice a week, GP is out near daily, and he has a community alarm and is pushing that up to 4 times a day!

We saw haematology on Monday and they have suspended velcade (had 2 cycles). He is happy with that as it was in his words 'killing him'. Although today he asked me if he was having bloods this week before chemo (he gets very confused lately but hard to assess over the phone if medical or alcoholi – although getting used to telling difference). Still waiting on kappa results which in dec were 1540!!! Then decide where next. Kidneys functioning at 50% and lost 3 stone in weight so will make Rev a more easier to get funding for according to consultant. Then we went to fracture clinic where the real bombshell was dropped. Yes dad does have a fractured humerus but the area of concern is the shoulder socket and ball and partial collarbone have disintegrated, they are just gone. So he's lost use of right arm.

My dad isn't coping at all now. He is verbally attacking everyone, his carers are scared of him and come in pairs, his key worker avoided us at hospital, I've had concerns raised about alcohol abuse by social services, he's hanging up on me, there is so much more I could go on but if you get this far I'll be amazed.

So I find myself writing this on a phone in the small hours and I feel totally unable to help him. He sounds suicidal which isn't my dad. It just fills me with sadness to hear him like this. He doesn't help himself by offending everyone, it's frustrating.

Tanya 🙁

[VickiParticipant]

Hello Tanya and dad,

So very sorry to hear of the difficulties you are doing through……is your dad able to look objectively at the situation? Is there a problem with alcohol? How would he react to someone coming to see him about it? The trouble is, he has to be the first one to admit it if there is a problem

Making it difficult for the health professionals and carers to help does not help his situation…..or yours! Mm is a very harsh condition and it takes no prisoners. You don't say why they have suspended the velcade….is it due to his bloods? Is there no way they can hospitalise him for a while to get his mental and physical situation under control?

Best of luck to you both 🙂

Vicki and colin

[tanyaParticipant]

Hi Vicki and Colin,

Thanks for your reply. I guess the problem is alcohol. It has destroyed his life, lost his first family when they were young as his wife left and took kids. My mum met him when he was pretty injured after a car crash, then my mum left him and took me when I was little. Numerous drink driving bans. I tried to talk to him when I was a teen. He has advice for all his friends in similar situations but doesn't see it as a problem he has. I'm now 38 and a mother of three (4,3 &1yrs) and last week I told him that I could not bring the children as its my duty as a parent not to put them in an environment where there is alcohol abuse. That was tough for both of us but did some good for a few days.

Anyway I digress (sorry), he refuses hospital due to no tv and probably no alcohol. Yet again the dreaded 'A' word comes up! They have stopped the velcade as its clear its doing more harm than good, been anaemic, neutropenic, passed out, broken shoulder with fall, PN. Basically if the kappa free light chain results are good they'll probably continue with it but the general impression consultant gave was after such a break from it (2 wks) he shouldn't be feeling this bad still. It's tough.

He's always had a temper and just drinks, was never violent to me but I guess hurtful and selfish. Things I have only realised since being a parent myself. In my eyes he is and always will be my dad (Ron) despite his flaws.

Thanks for listening to me vent.

Tanya
X

[tomParticipant]

Hi Tanya

I can honestly feel for you as I also was brought up in a household that revolved around drink as a child, Both my parents have now passed away Dad first then Mum, I never used to take my Sons (all grown up now) to "Scot Nanna's" due to her drinking habit.

That said to show you you aint on your own 🙂 xx

That said I wish you Luck with your Dad and I dont think it is going to be an easy route for your dad or you, but he needs first to tackle his drink demons first to get the help he does and will need.

Take Care
Tom Onwards and Upwards xxxx

[tanyaParticipant]

Thanks Tom,

You truly are inspirational in the way you talk about Myeloma and support other users on this forum. I spoke to Dad this evening and he was ok. Yesterday was just a really bad day what with one thing and another so I guess he chose to take it out on those closest. Sorry your upbringing wasn't a straightforward one either. But here we both are on the other side making sure history doesn't repeat it's self 😉

I guess depression is par for the course with the journey dad is on. Let's hope those free light chain numbers are in tomorrow so we can see what's in store for dad.

Take care,
Tanya
X

[DaiCroParticipant]

Hi Tanya,

I appreciate your stand in not taking your children to see your Dad… and I also feel sorry for Ron for having to deal with the demons brought on by alcohol on top of the problems presented by MM. But I am also quite sure that he knows what effect his behaviour has towards those that are only looking to help him. It becomes a vicious circle that only he and he alone can break.

It is hard enough dealing with MM with the back-up and support of a partner and family, never mind on your own with some serious problems in tow… the skeletal/bone problems and the personal problems. If he has started missing appointments etc., then he is soon going to find dealing with the minutiae of everyday life very difficult indeed because the carers won't put up with the threat of violent behaviour for very long. As Vicki pointed out, it seems that he could do with a stay in hospital to get him back in balance before they can sort out treatment and care plans.

I'm afraid that I have very little sympathy for those that take it out on those closest to them… whether they be family or paid care-workers… any way you look at it it is not acceptable and someone (his GP for instance) should lay down the law and make it quite clear what is and what is not acceptable when all everyone is trying to do is to help him.

My sympathy lies with you and with your family and I hope that your Dad's Light Chains start improving and give him some hope and momentum towards facing up to MM and accepting the help offered with good grace and a determination to get a grip on his drinking. It won't be easy, hence the need for his consultant to work with social services and his GP in formulating a care plan that works for everyone involved.

Wishing you all the very best.

Dai.

[tomParticipant]

Aww Tanya Gi Ower or yel mek me blush 😉
Well we are through the upbringing stage and have moved on broke the chain am pleased to say.

I do hope your dad sorts himself out for him as well as the family.
Your dad is in for a rough ride with the mix that he is in so you must brace yourself as you know you will be the whipping girl to shout at 🙁

I understand you want to help your Dad but please dont take too much on yourself if Dad wont allow you to help without putting too much pressure on you.

I wish you both Well during your dads treatment

Love Tom Onwards and Upwards xx

[tanyaParticipant]

So here I am less than four weeks on from my original post of frustration and now I find myself realising it was all part of Dad's journey of coming to terms with the inevitable. After my message i had an apology from him about his behaviour, something I know was extremely difficult for him to vocalise. We (my husband and I) went with him to his haematology appointment and the fracture clinic appointment. Haematology confirmed their decision to suspend treatment and gave him until 17th April for his body to rally before starting on Rev. They also wanted him to meet with the Radiotherapist to explore the possibility of radiotherapy on his broken arm. The fracture clinic confirmed this was an acceptable option and surgery wasn't required. Afterwards I finally sorted his LPA and had his will witnessed.

He sent me flowers, never before has my father sent me flowers. He instructed me to buy presents for the children and beer for my husband. And to talk to my mum more. (That is another whole new childhood trauma!!).

He attended his appointment with radiotherapy the following week and they planned to do 5 days radiotherapy.

On Tuesday of last week an ambulance was called by his carers as he was refusing to eat. The hospital were less than helpful over the phone and I just assumed it was the usual anaemia or hypercalcemia. On Thursday they actually called me (always wondered at what point next of kin was called) and I was advised that there was nothing more they could do for him in terms of the MM as he had pnuemonia, hypercalcemia and chronic kidney failure and was made aware of a DNR.

The terminology was imminent, days, hours, very poorly, comfortable. We arranged childcare and got to the hospital within four hours. It's a 260 mile round trip. He has exceeded all expectations. They didn't think he was going to survive the first 24hrs then, the weekend and now it's Thursday. Now we are desperately trying to get him into a hospice for his final days. (He hates being in East Surrey Hospital!) He isn't really with us any more but is still aware of who I am. I haven't seen him today but his pain meds are now pump driven to make sure he gets the full benefit as swallowing is difficult. He seems very comfortable now. When he is able to talk he talks about going home and his passport mostly. He knows he needs to continue his journey but is still fighting on. It breaks my heart to see my dad so tired, none of the alcoholism matters now, all he ever was was a little cranky and sometimes not the rock I imagine the perfect dad would be but as I reflect, I realise that now he isn't there to call on, that actually he was there, more than I perhaps realised. And for that I thank him.

I guess you'll find my over in the end of life board now. I'll probably post this there too.

Tanya

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