Hey all I'm not sure if i am in the correct area to open a discussion but hopefully i will attract some response and hopefully some well saught after advice! ...
My Mum has copd/Vascular Dementia.. she came to live with me to be taken care of at the beginning of 2011.
Her longlist of Medication :-
Salbutamol x 4 Puffs Am/Pm } Via spacer (this was changed when Mum's condition "copd" progressed) Around July 2011 Respiratory Nurse prescribed 2.5 salbutamol nebules via nebulizer x 4 Daily.
Seretide x 2 puffs Am/Pm } Via spacer
Mirtazipine 30 mg
Additional (occational meds)
When Mum first came to stay with me she had severe copd .. from january through until May she was admitted to hospital a total of 5 times with severe chest infections and exacerbations .. My view on this is that .. would it not be presumptuous of me to think that there are 2 reasons for my Mum's frequent respiritory ailments .. Number 1 being that i was completely novice at taking care of my Mum. I had now idea how to recognize the earlier signs of CI's, excaserbations and equally not knowing what to do in the event of! I also think that My mum at that time was going through what i call an "adjustment to medication" stage. I really think all this medication has contributed to the weakening of her respiratory system.. (but ofcourse I might be wrong) Don;t get me wrong I'm not saying that all the medication was prescribed wrongly, i believe it has a a place. As time went on I learned to manage Mum far more efficiently at the same time as learning wht it's actually like living with someone with the combination of these conditions! Having Copd is one thing but having copd and dementia at the same time is another! It brings a whole new scope of emotional stress and knock on effects as a result of.
Over that year .. progressing into August there were lots of discussions with District Nurses.. Gps .. I felt that at this time My Mum's condition was worsening and quickening in it's pace taking my Mum closer to her demise. Chest infections and exacerbations every 2-3 weeks increasing anxiety, breahtlessness on minimul amount of exertion. By September Mum's condition had worsened so much that she became housebound infact bedbound .. bar going to use wc and bathing (which was becoming increasingly difficult) ... So much so that the Gp had said that Mum's prognosis wasn't looking promising, her life expectancy was months rather that years. It was recommended that controlled drugs were to be brought onto my premises (just incase drugs) they're, to my knowledge, to ensure the patient is comfortable when there demise is imminent (This is how seriously my Mum's conditions was taken!) ...
Over this time having spent every waking second with my Mum .. i began to question whether this medication was perhaps contribtuting towards my Mum's deterioration! And i feel I was quite right to question her meds ..i requested a review of her medication .. i was expecting suggestions of taking her off atleast 2 medications! she had a kidney function test which came back as a some renal failure was going on. i can only presume this was due to medication as the gp ..went on to suggest stopping the simvastatins! one less is better that none. I just want to add at this point that recent discussions held between me and the Gp "he stated that Aminophylline was a medication that comes in and out of favour) what the hell am i supposed to think?? So if was a Med that was frequently debated then why not suggest trying her without that also ???
Anyway towards the end of the year .. things were not looking good for my Mum and within the family we began talking of funeral arrangements. Also started thinking of getting my sister and brother up here to with us because time was looking short for Mum .. she was in bed all the time (comode next to bed .. and extreme breathlessness) i felt that if i were to raise concerns regarding medication would be met with a full stop! The questions that were in my mind and i could not settle and they certainly were going nowhere i felt they needed some careful thought!
- Mum's condition worsening .. are the meds helping?
- Med's in question are for the break down of mucous .. perhaps they were doing that .. but the mucous is getting infected because she is not diposing of it
- Is this medication stopping CI's .. NO
- Stopping exaserabations ....NO
- Stopping breathlessness .... NO
I thought well what is the point in administering medication to help when it clearly is not helping! I took into consideration that before my mum began on this medication she had NO exacerbations, CI's once maybe 2 times per year .. breahlessness was certainly not to the extreme that it was in December! and that since being on any of the meds/inhalers mum's condition has deteriorated rapidly to the near point of death!
We decided that in December enough was enough and we were to take her off the meds completely, only to give inhalers when required! (without consulting the GP) Despite what the gp has said in our most recent discussion I think it is strongly debatable whthr he would have agreed to do be a part of withdrawing the meds??
My mum's progress so far .. I have seen an increasing improvement in my my Mum's condition :-
She has not had an exacerbation since December ..She may or May not of had CI she possibly has! I suspect as much as she has to date had 2x urinary tract infection.. treatment :- trimethoprim. I'm not saying that she will never have another chest infection, she has copd she is prone to infection.. If the medications given are not to stop the very thing that was flooring her "for want of better words" then why ? continue to medicate her?? SHe has no breahless episodes, can go up and down the stairs with ease, without desperately gasping for breath!! Don't get me wrong she will never be running up the stairs but she no longer needs to stop halfway up to get her breath back! she can go up, go to the toilet come back down and sit down and drink her tea..the the bare minimum of breathlessness .. put it this way I get more out of breath walking up a steep hill!!
I truly believe that the medication had a huge negative influence on my Mum's lung function .. it would be very interesting to see an xray of mums lungs now!
Having taken mum off the meds it would appear there have been vast amount of improvement.
I then started thinking of the legal side of things ie .. because i hadn;t told the gp could I be accused of neglect in some way for not consulting the gp before taking such steps? I sought advice from solicitor because i became quite concerned about me position in this situation .. the solicitor advised that I am in no danger because my Mum's condition has improved! He recommended I right a letter of complaint to the Gp revealing the steps had taken re her medicationn and requesting a discussion ! The Gp was more than happy and in all fairness was somewhat supportive in the area of neglect he made it perfectly clear that noone could ever accuse me of not having my Mum;s best interests at heart and anyone who accused me of such would be critisising me unfairly so.
He has a greed that Mum's condition has improved but is adament it is not withdrawel of meds .. we have agreed to differ on that. To me it's obvious but for some reason I feel he is on a bound to stick up for his profession! As am I to stick up for what I have seen so far ! As i said earlier we discussed the Aminophyllin and i expressed my views on that. He impressed that he would have weened her off of the medication rather than just stop it (fair point) but what's done is done! i can't go back now.. We are in agreement that putting mum back on medication wouldn't be the best move and we are going to continue with the way things are and seee how things go! he also said that i should expect a decline in my Mum within the next couple of months.. that comment just vexxed me to be honest ! taking into consideration the past year she was expected to last no more than a couple of months.. in a pretty much vegetative state! and now her quality of life has improved by 50% if not more i felt that was a bit rich !! I mean yes maybe she will decline but it's a lot less probable than it was looking in December.. so to be honest I think that it was an unfair statement to make x ... It has rubbed me up the wrong way and i feel it was ignorant to everything I had tried to speak about .. Oh and by the way the conversation was pretty much dominated by the Gp .. and i had to butt in while he was talking to say what i had to say! He said I raised some fair points "when" he listened but i ask mysself sis he really listen or was he just making the right noises!.. i got to say he is a nice guy and does have my mum's best interests at heart .. but that doesn't mean he's always right... as in any way of life! Tbh though ireally do need to impress that the Gp is pretty much on myside and is supportive ... all round a great Gp i truly feel that some of this medication was not doing Mum the benefits they were supposed to...but i do feel that inhalers and nebs have an important role to play!
i really would like some recommendations for alternative therapies for my Mum's condition/s
Anything atall would be most appreciated ...ie something to aid in the break down of mucus.. perhaps herbal remedy, or aromatherapy!
I was diagnosed with COPD in 2009 and after many different medication I now use a Nebuliser
with Salbutamol 2.5mg/2.5ml 3 x daily, Atrovent 500 mcg/2 ml (replaced Ipratropium Bromide
500 micrograms / 2ml) 3 x daily, together with the Salbutamol, which is quick acting. Pulmicort
Respules 0.5mg/2ml (being changed to Flixotide) 2 x daily.
Famopsin 40 or Medoprazole 1 x daily for the side effect of one of the other drugs and a multi
vitamin because I am not a teenager any more.
I don't take the Remedol, I grin and bear it like us old soldiers were trained to do.
I am now classed End Stage COPD, have a sever curviture of the spine and a fixed rib cage due
to Ankylosing spondylitis. I get the shakes (well my name is Stephens hahaha) no reflex action
and memory loss, plus a growth on my liver. I sound like an hypercondriac.
I am waiting for an upper back CT scan and a brain scan (they have to find it first) I can do very
little for myself which can be depressing for an action man who was once attached to the Royal
Marine Commandos onboard the helicopter carriers.
I am known as a joker to get people laughing irrespective of how I feel but I have developed an
agressive streak which is getting more often.
Anyway you can only do what you believe is best for your mother.