Why cant they tell us the truth !

[blandford516]

Hi all ,
My mum is I think in the final stages of V dementia . She is totally immobile,doubley incontinent , cannot communicate ,copd, mrsa, pressure sores and chest infections most weeks . She is also on purified food as her swallowing reflex is going and bed bound. What I am annoyed about is that the NH knew for over 2 months that my mum had mras in an old wound (an operation scar from 47 years ago ! ) they failed to tell us ,especially as we kept asking for the results of the swabs . We told the NH home that we want to know any results or infections etc but they persistently fail to do this . My sister has full POA and has expressed on several occasions that we need to know . We visit mum at least 3/4 times a week . So it is not as if we never bother going to check on our mum . We were recently asked ( in front of my mum ! ) if we would sign a DNR,which my sister and myself had already discussed and agreed to , which was not a shock but totally shocking that we have signed our mums life away , but the right decision but horrendous one to make . Now mums eyes are totally blurred up , she has had this 3 times and each time me and my sister notice mum is almost totally non responsive ,and we come to the conclusion that mum is going . But no one has talked to us told us , why or what is happening . I think I know ,perhaps I don't want to except it , especially as I lost my lovely dad back in May and have not really excepted that either !!as soon as my dad went I focused on my mum and not had any time to come to terms with it all . I am confused and sad , and too be honest I want my mum to go and be at peace. I just wish someone would put me out of my agony and tell me mum is going ! see I cant even say it ! and feel selfish , but it is absolute agony watching this all over again . Sorry guys just feeling low tonight and wish someone would tell me the truth x

 

[Redpoppy]

You seem so anxious and upset I felt I had to offer my sympathy,and fully understand how you must be feeling,especially having lost your father recently. It sounds as if your mother is very ill now and receiving maybe palliative care,however I would speak to the person in charge of the NH and ask for a detailed account of her condition,and if I was not satisfied I would make an appointment to see the GP whose care she is under. I 'm sure before long someone else from TP will be in touch with suggestions.Hope you feel better now

 

[Soobee]

I am so sorry that the care home are not communicating with you. My mum is in the last few weeks of life (the care home have said) and sounds very similar to yours in terms of her physical situation, including the MRSA, except she has given up eating and drinking more than a few sips a day.

The care home contact me at least once a week by email now to keep me informed, but I am going in nearly every other day so I can see for myself. They didn't really contact me as much until recently.

It is not acceptable for them to talk about things like DNR in front of your mum. And they should keep you informed. Write to the manager of the care home and ask for regular updates. Could you talk to the supervisor on that floor/area at all?

I understand totally that you want to know the truth so that you can prepare yourself. Unfortunately there is no real timescale on these things.

 

[garnuft]

I think sometimes the Doctors are afraid of speaking about the truth unless invited.

I would arrange to meet one of Mum's doctors and ask them plainly 'Do you think she is dying?'.

I think then they will be obliged (and probably relieved) to be able to speak freely and honestly.

So sorry about your Mum. I wish her comfort and peace.

And the same to you and your sister with added strength and courage.

You have had a hard time and still it goes on, you must be exhausted.

Take care of yourself too. X

 

[blandford516]

Hi Guys,
Thank you for your response . I am finding it really hard but need to know the truth and not pussy foot around as I believe they have , probably because they just don't like to say . But we need to know and prepare . We think it is going to happen but we are no experts but it is obvious to us and if it is the case we need to know if mums pain relief is sorted etc so I think it is time to face up to the truth and speak more openly to the nursing staff and mums doctor and insist on the truth at last . I really want to run and hide because after dad went I shut off I suppose , but now mum I sometimes feel the heart ache of it all will break me . Scared but as an older sister I will have to be strong for my little sister ,which I will be , as we cannot rely on our 3 big bothers to help us ,they truly have become invisible !! until the will is read ! and I expect they will emerge . x

 

[tarababe]

Your brothers sound like mine is and it's awful having that to deal with along with everything else. I don't know what to say to help you through this awful time as we all cope in different ways. I lost my mum in May and had to go through an inquest as well and we are only now at the stages of finalising her estate. It's awful and I could cry every day when I think of her and what she went through. I guess all you can do is cope best you can and take each day as it comes. Maybe get some help now, someone to talk to if you feel at breaking point but definitely talk to the NH manager. If you need to know for sure what stage your mum is at, someone should tell you.

Please come on here as there are so many people who understand your pain and what you are going through and although we can't take the pain away, sometimes talking does help.

Take care of yourself hun and try to get sleep and food when you can, you need your strength to help you get through this stage. I'm thinking of you.

 

[annie h]

Just wanted to say thanks. After reading some of these posts I plucked up the courage to ask the nurse in charge at my mother's NH whether she thought my mother was close to dying and I'm so glad I did it as I feel far more aware of where we are and better prepared. She broke her hip and arm in December and doesn't seem to have recovered at all - she seems to have given up hope. I can't believe she'll last long with the few sips of fluid she's taking each day and she is really struggling with swallowing .... but she's always been courageous and determined so it won't be a surprise if she comes back from the brink. She has her plaster taken off her arm this week so perhaps that will make her more positive. At least she may be able to move a little in bed without assistance.

I share the unhelpful sibling problem. I've told my dear siblings but will they take the trouble to come and see her before she passes away or will they just turn up at the funeral?

 

[garnuft]

I think the reluctant siblings are afraid of life and death staring them in the face.

Try not to waste any energy thinking about them, I know it's hard. I have a very polite friendly family but if I gave vent to what I think it would lead to an apocalypse...so now I don't think about them.

I wish the same for you...it's a waste of emotion and thinking time.

Your Mum...I hope your Mum and her courage, bring her to peace. XXX

 

[annie h]

Thanks Garnuft, you are so right and it helps to know I'm not the only one going through it!

 

[blandford516]

Hi ,
It seems to be one thing after another lately. My sister has full POA for mum . We were going in on Thursday to have a meeting with the nurse in the NH and perhaps see her doctor , but unfortunately my sister has been taken to hospital !! so I am focusing on her making sure she has everything she needs and mum !!! looks like year is not going to be good either !
Mum is not good either she seems very flushed so they were calling the doctor out to her and we are waiting to see the results of the second swab to see is mum,s mrsa is under control . So off to see both patients shortly and find out what is what !!!
Funny enough I see no sign of my invisible brothers !! im sure they will turn up at mums funeral all weepy etc false .

 

[Pigeon11]

Hi Blandford

I responded to your recent post on my thread to say I hoped all is well with your sister. You sound like you are having a tough time of it so I just wanted to offer my support.

I hope you manage to get some direct answers today about your Mum as I know one of the really difficult things about all this is the uncertainty. Many people have said this but it's just so unpredictable. I like the comment I saw on here once or twice, "Once you met one person with dementia, you've met one person with dementia". So I think a lot of the pussyfooting is that people are afraid to commit to a view or opinion because of this. Having said that they can, and should, tell you medical facts and some idea of the potential outcomes for your Mum based on those facts.

I really wish that this year is not another bad one, as you predict. It may seem that way at the moment but when I feel like this I try to remind myself that good things have a habit of happening when you least expect them as well as bad things.

Take care and sending lots of love
xx