Need some urgent advice please!!

[juliejo]

I wrote a while ago asking for help for my dear father.
Now i need your help even more please as so worried and scared.

My dad is 83 with Multi-infarc Dementia. He is now declining rapidly and showing some very scarey symptons which are extremely worrying for all the family especially my precious mum who thinks dad won't be here for much longer.

He is still at home but goes into respite once a month for a week and also daycare 3 times each week to give mum a rest.

Dad suffers daily TIA's but they have now got very strong and he is in alot of pain. His memory, sight and hearing went some weeks ago but did come back but since then he had deteriorated quite quicky. This has happened before but not this bad.

The past few days mostly in the evenings he gets horendous pains in his head, eyes, face and down his arms and legs and is very frightened. The Gp has said there is nothing he can do as he is on the correct medication. Dad takes an awful lot of meds a day as has other serious health issues as well.
After this happens dad is all over the place and mum had to somehow on her own get dad into bed. He is also permantly cathiterised as well.

Dad is an extremely religious man and very gentle. Never looses his temper at all. Think that what keeps him going.
However the other night he said angels visit him and sit with him at night and that the Virgin Mary comes as well. We go along with all this but its so upsetting to watch all this and feel so helpless as well.

I am ill myself with Fibromyalgia and ME/CFS and cannot do much to help mum.
Mum will not have any help at all so we have to abide by her and dads wishes.

All we have been told to do if he gets any worse is ring 999 but we know that will agitate dad even further and probably spend many hours on a cold trolley in A@E.

I just wondered if these pains are normal as getting nowhere with the Gp. All he says is he can do nothing as he has had a nother stroke.

Sorry but just need some advice here as we are at our wits ends waiting for the inevitable to happen which are told could happen anytime.

It made alot worse as its Christmas too.

Thanks for reading.

Julie.

 

[Canadian Joanne]

Dear Julie,
I haven't any advice just that I'm thinking of you and your family in this very hard time for you.

 

[Grannie G]

Dear Julie

The suffering your parents are enduring sound too much for anyone to bear. I wish I could offer advice but it is outside my experience. I am surprised the doctor can`t offer any release for the pain. Pain is the hardest to endure.

I would ask the doctor again.

 

[Cate]

Dear Julie

In your position I dont think I would be willing to accept the 'nothing more can be done'. I would be asking your dad's GP for an urgent referral to the appropriate Consultant e.g. Stroke Clinic. To leave your dad in pain is simply not acceptable.

To suggest you wait until your dad is in that much pain that you have no option but to call 999 is in my book not far short of neglect on the part of the GP. In this situation you would be left seeing all sorts of A & E doctors, who lets face it are not specialists in this field. I am also very sure to have your dad admitted via this route would be very very stressful for all concerned.

I think that some GP's fall far short of good practice care, and they hope that we have the view that 'doctor knows best'. I would not be willing to accept this at all, YOU know best when it comes to your dads care.

I hope you are able to sort this for your dad.
Cate xxx

 

[alfjess]

Dear Julie

Have you been in touch with your Dad's consultant, or even his CPN, or social worker?

Do you have admiral nurses in your area?

Sorry if I am stating the obvious, just thought I would mention the above.

love
Alfjess

 

[juliejo]

Thankyou.

Thankyou for your support it means alot as i don't feel so alone.
I am ringing the Altzhemiers Society later as they are involved alot with both mum and dad but are not aware of this situation.

When dad lost his memory sight and hearing some time ago i put in a complaint to their practice manager and also to dads Gp as we have had so many problems over the years with them.

The Gp once again refused to come out yesterday and told my mum over the phone that the Tablets he is taking for his sinuses are giving him these headaches.I will not repeat what i said as i rang him back and let rip.
All i got again is that dad in on the right medication and there is nothing anyone can do.

Cate dad will not under any circumstance go and see a consultant at the hospital at all and got very agitated when we tried to explain. The journey itself would kill him as i said he has other serious health issues as well.

Today he is going into respite care and will be in the care of their Gps nurses etc so that it of some help if he gets any worse.

Oh Alfjess what are admiral nurses please as never heard of them.

Will keep in touch when i can as not very good at all myself today.

Julie.

 

[Grannie G]

Dear Julie

Just in case Alfjess is not on line before you go, the following link will give you some more information about Admiral Nurses.
http://www.fordementia.org.uk/admiral.htm

 

[Helen33]

Dear Julie

It does sound from your posts that there is little or nothing that you can do because of your parent's wishes. The angels visiting your dad are experiences other people, some of whom are not unwell, have and if your dad is comforted by their presence then that is wonderful.

Will keep in touch when i can as not very good at all myself today.

This must be a terrible strain on you Julie and I, personally, feel that Talking Point could offer more support to you than to your father at this time. Hopefully your dad will get his pain managed once he's in respite (although I have no experience of respite care).

Love and best wishes

 

[Margaret W]

Dear Julie

This is all rubbish (from me), but hope it helps in some way.

You say dad is having daily TIAs. I had one a month ago. Very odd. I am 56. My eyes went funny, my mouth went numb and my finger tips are still numb. The sensation was very, very odd, I cannot liken it to anything else I have ever experienced, but it was scary-feeling. I am fine now, but would not like another. Your dad is having them daily? My experience was that I felt very weak afterwards, so your dad possibly feels permanently weak. Loss of sight is a common result of TIA's, and in some respects you are lucky if this is all that happens, cos paralysis is also common, and that could be paralysis of the body (often down one side), speech, or the throat meaning a person cannot swallow, or worse. Not meaning to scare you, and if Dad is "only" having TIAs he might suffer none of these, or only suffer them for a few days (48 hours is supposedly common). But I did not experience any pain.

The drug treatment seems to be pretty standard. Something to thin the blood, could be aspirin or warfarin (more extreme but common, you will know if he is on warfarin cos it requires frequent blood tests), possibly Risperidon, and possibly something to reduce cholesterol. They are all dead common treatments, and you should not be alarmed by them.

So if dad is on all of the above or similar, it is probably the right thing for that condition (I am no medic - check with the GP).

I suffered no pain with my one TIA, so your dad is in a different situation, and it sounds to me (as an amateur) that there is something else causing the pain. I have seen 3 rellies with strokes and pain was not a problem. I don't know for sure.

Could the pains be migraine-related? I once (and only once thank God) had a migraine and it caused me two months off work. I had never previously had more than 2 days off work in a year.

But whatever they are, it does not sound right that your dad is being "fobbed off" without a proper consultation and no visit from the GP. To wait until you have to dial 999 is not acceptable when the symptoms are already there. I wouldn't think such pains are "normal" at all.

As said, I am no medic, and sometimes people have to endure a lot of pain, but usually pain relief is offered to some extent, and they are certainly not supposed to just put up with it.

So the tablets are giving him headaches? Well, there are headaches and headaches. We have all had a headache, it goes with 2 paracetemol. Your dad's is not going, so something else needs to be done.

Do you have an "out of hours" clinic in the area that dad would go to when he is feeling bad? They will probably refer him to hospital but it might not be the "cold trolley" that you mention but a warm bed on a GP unit as I had. Still the same waiting around, I have to say, but at least more comfortable and better feeling.

I don't know love. But you can't have dad in pain for no reason (tablets are not a reason, I have never read any contra-indications that suggest pain is acceptable). What a great pity you don't have confidence in his GP, I have absolute confidence in mine and so does all my family, and so we should have.

As for your dad's religious beliefs, well, he must take great comfort from them and make sure that he does. Anything that helps him is worth grasping.

Oh dear, sorry to have been no help at all. I don't know how you deal with it if mum and dad refuse help, but I think you have got to get it to them somehow. It is not right that he should be suffering in this way.

Let us know how you get on.

Love (and Love for Christmas too)

Margaret

 

[jenniferpa]

I must admit that Margaret has highlighted something that I was wondering about: on the whole strokes don't cause the sort of pain you're describing and I would be most certainly concerned that something else was going on.

P.S.

Having said that I now read this http://www.painclinic.org/nervepain-centralpoststrokepain.htm

 

[citybythesea]

...I'm glad Margaret that you vocalized on what you went thru. It helps those of us that have not in the situation be able to understand.

I'm not trying to cause any hard feeling here either...but I have had conversations with other carers and a few practitioners who all agree on one thing. That once a peson truly has Alzheimers it is very hard to tell if they are in pain. While you and I automatically retreat with pain an AZ patient no longer has the brain synapsis. So sometimes what we perceive to be pain is not and what is not to be perceived as pain can be.

Moms last few months of her life were riddled with strokes/tia's whatever you choose to call them. I know she had tia's because I was with her almost 24/7 and know what circumstances were at the time. They could only be confirmed with MRI's done on her brain along with the CAt scans. Towards the end mom only showed signs of pain when we would give therapy to her joints, as she was retracting into the fetal position. (to recognize this I related it to being in one psition for a lengthy period of time...then getting up and even I get a little stiff and feel that mild pain at times)

While we all love our AZ patients sometimes the best route to go is to become overeducated on the type of disease. so you can better understand it. Sometimes this too, can lead to moments and insight you may be able to give on your fathers condition. {Physicians have a tendancy to treat those they know are not knowledgeable as children and those that can question them (in a respectable way) can sometimes get more out of a dr. From my experience being rude to the medical practitioner has a way of closing that door till you can get another open.

Just my opinon...sorry if I hurt any feelins.


HUGS


Nancy

 

[juliejo]

I have taken on board everything that has been said above but my dad at 58 years of age was diagnosed with Vertebra Basilar insufficiency and from then until now has had daily TIA'S until he was eventually diagnosed after tests and an MRI scan that he suffered form Multi-infarc Dementia. Dad is now 83 and we have had to watch as a family dad suffer.
My dad was injured very badly at the age of 26 when a horse he was riding through him and it landed on him. He had severe injuries and most of his bladder and bowel had to be removed.

When i was 3 he developed TB absesses on his spine and was operated on which left him paralized for a year and has not been well since.

Dads pain caused by his TIA'S was today confirmed by a specialist who came to see him in the care home and that it was connected to his condition.
His pain starts in the neck where the basilar artery is and spreads up over his head causing sight loss and his balance will go. He is then violently sick and looses his memory.
The pain then travels into his face and down his arms, chest and legs which dad describes at prickling and burning and sometimes stabbing especially in the head and eye area.

Just wanted to say that no-one offended me at all.
I also hope that i havent offended anyone either.
I just felt like coming on here tonight and telling you all a bit about my dear dad who i love to bits.

I just feel so useless and helpless with my owm illness and so guilty i cannot be there for them both.

I have a brother who lives about 10mins away who just says that dad is old and does nothing to help at all. It gets me so frustrated and annoyed sometimes especially when he knows that stress of any sort will put me in bed for days on end in so much pain and fatigue with my illness.

Well best get off to bed now i think but just want to thank you all as you are a great help to me as have no-one to talk with.

Julie.

His medication is now being looked at as its been found that dad has been taking 3 types of anti-depressants for years and god know what else.

 

[Margaret W]

Aw Julie I feel I have minimised the things your dad is going through, cos I did not know about all the other traumas he has suffered in his life. This is nothing like my situation, with a single TIA and nothing else to report, your dad is in a different ball park. Forgive me, I am sorry. My opinion was based on a much more minor event than your dad has experienced, I just didn't realise that.

However, in my little experience of strokes, pain is quite unusual. Please ignore that if you think I am wrong, cos I well might be. I mean it is unusual for pain to be caused by the stroke. A stroke usually deadens sensation - but my belief only as an amateur, but do consider if there could be other reasons for the pain.

Again as an amateur, and us ameteurs are useless, I wonder if the pain is due to neuroligical problems, e.g trapped nerves, or inflammation of nerve endings. Maybe TIAs cause that, I don't know. Might be worth him consulating a neurologist.

NO GUILT JULIE. You can only do your best.

Your brother is opting out. Perhaps he cannot cope with Dad's illness or yours. Count him out of the picture. I have no brothers or sisters, and in some ways I am glad. It was all down to me, and I could only do my best. I think I did it. I tell myself I could have done better, but that is life.

Try to take some time out for youself. Other people on here will give you advice on services that are available, I never used any, so I can't help.

What do you mean, you can't be there for them both? Do you mean your mum as well?

Hope you manage to get something sorted to give your dad some relief.

Love

Margaret

 

[juliejo]

Margaret thankyou so much for replying above.
I should have said that mum has Polymyalgia and also Crohns Disease as well and is run ragged with caring for my dad.

I am also going to take your advice and take some time out as been very ill in bed all day again.
My daughter came round today and said things cannot go on like this and visited her nan, my mother and is taking the pressure off me a bit.
If i don't watch it i will be back in bed for a very long time again with a bad flare and won't be any use to anyone.

I am also going to forget about my brother not helping as well as he never rings me or visits anyway or mum and dad alot either so can't see things changing.

If and when anything bad happens and i know it will at some time i can rest knowing i did my upmost to help and be there for my dear mum and dad and give something back for all they have done for me in my lifetime.

Take care Margaret and thanks again.

Julie.