Coughing after drinking in last/severe stage vascular Dementia

ladysuisei

Registered User
Nov 13, 2019
19
Sounds as if GP needs more input all round.
I know how difficult this is to get. I often think I am expected to have a nursing degree. Your dad is probably in deep denial. Try and get a break if possible. X
Thank you for your reply. We do have a holiday planned for May. Last year we didn’t go at all. The denial is making an already difficult situation impossible. Now we’ve had the response from the SALT team , I’m hoping the doctor will follow the recommendations. The way I see this is that because my mother is at home, we are left to our own devices . I realise in any care facility or hospital, nutrition would be phased out because of the extreme risk of aspiration. Seems like when you are dealing with in your own home, nobody will actually take responsibility for managing this known risk. I’m terrified that one day I’ll be there and my mother’s heart will just give up. All this choking, to the degree where she’s purple in the face and spending at least half hour to an hour crying out afterwards is the most horrific thing I’ve ever seen.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Hi there thanks for your reply. It’s totally impossible for me and my sister to leave my dad in the lurch with mum’s care. He only gets respite from this horror when we go over 3 or 4 times a week so he can go out. I feel desperate actually, because now we’ve received the copy of the “ recommendations “ from SALT I believe that the gp will also have this too. The SALT lady wants the doctor to become involved, I think, because of the real risks associated with aspiration. God, I can’t believe it’s come to this- I know my mother is in pain,,,,,,but dad is in a state of denial and won’t ask the palliative team to review the dose of fentanyl. I dare not go behind his back and speak to them myself. This will definitely cause a rift and tbh I just dont feel up to dealing with family tensions as well.
I keep voicing my views re the pain management review- dad actually gets annoyed when I raise this. He maintains that it’s just uncomfortable. Last night my mother had a particularly bad choking episode- she goes purple in the face and can’t catch her breath or cough or anything. My limited knowledge ie off Google, tells me this is putting so much strain on her body one day her heart will just stop. She is incredibly frail.
I think that me and my sister are in a fairly unique situation because my father seems oblivious to the warnings we’ve been given. He just says its a problem with no answer. I am hoping that the gp will intervene now. It’s my view that if the gp ignored the warnings highlighted by SALT, this would be negligent, surely. I’m feeling bleak- I’m seeing my cpn tomorrow, but actually she’s pretty useless. Well, unless because of my personality disorder, I start becoming irrational and/ or a danger to myself. Then I suppose she might actually listen. I just don’t know where this is heading. Last year, me and my OH cancelled holiday plans . This coming year he’s insisting that we go to Crete as planned in May. I have been in this state of high stress and extreme worry for 2 years without a break. This year I’ve been told I need to just carry on with what he booked...... of course even being away is not a break as my father expects daily contact for updates. Sometimes I feel like leaving the house getting on a train and disappearing.
Your Dad is not well, no one could see your Mums distress & not realise the issues. Ring the palliative care team & explain the situation ask them to review & explain about your father’s unreasonable behaviour. Aspiration is incredibly painful, the GP & mental health team should do an assessment as your Mum at this stage should qualify for CHC, nursing care is necessary now. Your Dad no longer has a choice about what he wants this is about dignity in the final stages.
Sorry if I seem harsh.
Your Dad can demand away (trust me been here with my mum!) once you start saying no it becomes easier each time!
Please take care of you
Xx
 

ladysuisei

Registered User
Nov 13, 2019
19
Your Dad is not well, no one could see your Mums distress & not realise the issues. Ring the palliative care team & explain the situation ask them to review & explain about your father’s unreasonable behaviour. Aspiration is incredibly painful, the GP & mental health team should do an assessment as your Mum at this stage should qualify for CHC, nursing care is necessary now. Your Dad no longer has a choice about what he wants this is about dignity in the final stages.
Sorry if I seem harsh.
Your Dad can demand away (trust me been here with my mum!) once you start saying no it becomes easier each time!
Please take care of you
Xx
Thank you for your frank reply. I do believe that my father is not being rational- I can only guess this is because of this awful situation. I have suspected that his mental health is not right. Oh god- I did suspect that aspiration is painful we have a care package in place thanks. In your opinion, because the doctor has already been told by SALT that my mother is at significant risk of aspiration in addition to choking, would you think they will act? I spoke to my sister today and we both hope that the doctor will act on this information. I can’t imagine the full report could possibly be ignored by the medical profession. I really believe my dad thinks he’s doing the best for my mother............she is the centre of his world to the exclusion of everything else. Up until this swallowing deteriorated so badly, we seemed to be coping ok . The situation is a crisis now and it is very upsetting to see my mother struggling and in pain . What confuses me is that the district nurse has witnessed one of these choking episodes ( I wasn’t there) and I was hoping that she’d intervene. She didn’t- although she made a note on my mother’s record. I was hopeful this would lead to a visit from the doctor, who is based at the same surgery, but no. Nothing. If the medical people are turning a blind eye to this lack of dignity for my mother then who do we turn to ? I have actually spoken to the palliative care co- ordinator who says she will try to pay a visit soon. I can’t believe how absolutely gruelling this is , because I worry so much about my mother’s pain and dignity.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thank you for your frank reply. I do believe that my father is not being rational- I can only guess this is because of this awful situation. I have suspected that his mental health is not right. Oh god- I did suspect that aspiration is painful we have a care package in place thanks. In your opinion, because the doctor has already been told by SALT that my mother is at significant risk of aspiration in addition to choking, would you think they will act? I spoke to my sister today and we both hope that the doctor will act on this information. I can’t imagine the full report could possibly be ignored by the medical profession. I really believe my dad thinks he’s doing the best for my mother............she is the centre of his world to the exclusion of everything else. Up until this swallowing deteriorated so badly, we seemed to be coping ok . The situation is a crisis now and it is very upsetting to see my mother struggling and in pain . What confuses me is that the district nurse has witnessed one of these choking episodes ( I wasn’t there) and I was hoping that she’d intervene. She didn’t- although she made a note on my mother’s record. I was hopeful this would lead to a visit from the doctor, who is based at the same surgery, but no. Nothing. If the medical people are turning a blind eye to this lack of dignity for my mother then who do we turn to ? I have actually spoken to the palliative care co- ordinator who says she will try to pay a visit soon. I can’t believe how absolutely gruelling this is , because I worry so much about my mother’s pain and dignity.
In your Mums best interests you need to contact the GP but first also ring &take advice from the SALT team. These are the professionals with the clout.

yourDads mental health is a major factor but by removing yourself a little I hope you might gain perspective on this horrid situation
Xx
 

ladysuisei

Registered User
Nov 13, 2019
19
In your Mums best interests you need to contact the GP but first also ring &take advice from the SALT team. These are the professionals with the clout.

yourDads mental health is a major factor but by removing yourself a little I hope you might gain perspective on this horrid situation
Xx
Thank you. I am very disapointed that the doctor has been in possession of the SALT report for quite a few days but not even made contact.
I am making the decision to postpone a holiday which we booked quite a while ago, so instead of going in May we can go in September. It just feels as if there will be some really horrible things coming up for us all in the near future.
I am working towards things that will help me get perspective. I am very low mood at the moment, which is a worry because in the past, I’ve harmed myself in times of distress.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thank you. I am very disapointed that the doctor has been in possession of the SALT report for quite a few days but not even made contact.
I am making the decision to postpone a holiday which we booked quite a while ago, so instead of going in May we can go in September. It just feels as if there will be some really horrible things coming up for us all in the near future.
I am working towards things that will help me get perspective. I am very low mood at the moment, which is a worry because in the past, I’ve harmed myself in times of distress.
please don’t! you are not to blame in this!

ring & ask for a CHC assessment from the social services & the district nurse. don’t tell your Dad just do it.

Don’t cancel your holiday!
I keep doing this & it’s not a positive move!
I’m really low at the moment to , so keeping the bottles out of sight as the temptation to just obliterate it all is too much!
Tomorrow I am going for a long walk on the beach with my dogs! today work commitments mean I’ve already laid down ground rules & will be laying down more !

Family are in for a shock!
My husbands sister especially! every year I get given manky 2nd hand gifts from charity shops & car boots- she isn’t short of money she’s had 5holidays this year!!
I am actually going to return them to her & say I’m sorry but it’s broken/ smeared in chocolate/ can you exchange it please!

I am fed up with life & people! So I’m going to stand up for me. It will cause ructions but I’m fed up being the doormat, so my mental health is the most important issue to me; & I’m putting me first for a while!

the fallout is going to be immense!
 

TNJJ

Registered User
May 7, 2019
1,054
cornwall
please don’t! you are not to blame in this!

ring & ask for a CHC assessment from the social services & the district nurse. don’t tell your Dad just do it.

Don’t cancel your holiday!
I keep doing this & it’s not a positive move!
I’m really low at the moment to , so keeping the bottles out of sight as the temptation to just obliterate it all is too much!
Tomorrow I am going for a long walk on the beach with my dogs! today work commitments mean I’ve already laid down ground rules & will be laying down more !

Family are in for a shock!
My husbands sister especially! every year I get given manky 2nd hand gifts from charity shops & car boots- she isn’t short of money she’s had 5holidays this year!!
I am actually going to return them to her & say I’m sorry but it’s broken/ smeared in chocolate/ can you exchange it please!

I am fed up with life & people! So I’m going to stand up for me. It will cause ructions but I’m fed up being the doormat, so my mental health is the most important issue to me; & I’m putting me first for a while!

the fallout is going to be immense!
Good! Sometimes life gets scary for other people but hey ho.!You have to take care of yourself first. Not easy I know but let the fallout begin!
 

ladysuisei

Registered User
Nov 13, 2019
19
please don’t! you are not to blame in this!

ring & ask for a CHC assessment from the social services & the district nurse. don’t tell your Dad just do it.

Don’t cancel your holiday!
I keep doing this & it’s not a positive move!
I’m really low at the moment to , so keeping the bottles out of sight as the temptation to just obliterate it all is too much!
Tomorrow I am going for a long walk on the beach with my dogs! today work commitments mean I’ve already laid down ground rules & will be laying down more !

Family are in for a shock!
My husbands sister especially! every year I get given manky 2nd hand gifts from charity shops & car boots- she isn’t short of money she’s had 5holidays this year!!
I am actually going to return them to her & say I’m sorry but it’s broken/ smeared in chocolate/ can you exchange it please!

I am fed up with life & people! So I’m going to stand up for me. It will cause ructions but I’m fed up being the doormat, so my mental health is the most important issue to me; & I’m putting me first for a while!

the fallout is going to be immense!
Haha that really cheered me up!!!
Actually I feel slightly more positive today- not because anything has changed but because I’m not letting this all get me down any more. I can’t do any more worrying!
I do hope your SIL enjoys her “ gifts “ hee hee xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Haha that really cheered me up!!!
Actually I feel slightly more positive today- not because anything has changed but because I’m not letting this all get me down any more. I can’t do any more worrying!
I do hope your SIL enjoys her “ gifts “ hee hee xx
I’m pleased you are more positive, keep moving that forward. You have been amazing & can only go so far on this journey.
Your Dads decisions have consequences that are not your responsibility- medical professionals need to step up to the plate. If you don’t do it, trust me they will!
Keep strong!

ps- brought back cake & had a cuppa tea!
Xx
 

ladysuisei

Registered User
Nov 13, 2019
19
I’m pleased you are more positive, keep moving that forward. You have been amazing & can only go so far on this journey.
Your Dads decisions have consequences that are not your responsibility- medical professionals need to step up to the plate. If you don’t do it, trust me they will!
Keep strong!

ps- brought back cake & had a cuppa tea!
Xx
Thank you for your kind words- I live in hope that the doctor reacts to the SALT report.....it seems odd that they wouldn’t follow up a risky situation once it’s brought to their attention.
I had a long chat with my son and his wife on the phone last night. I told dan that I’m at the end of my tether, I feel guilty about being complicit with what’s going on- BUT I’ve decided to stop those guilty feelings right now. You are right, after providing a really good support for my father caring for my mother over 13 years has to be enough. I don’t feel guilty any more.
I have decided to stay as strong as I can - I met a friend for coffee today and ended up with a huge hit chocolate thing with whipped cream and a mince pie!!! I really don’t know how that happened!!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thank you for your kind words- I live in hope that the doctor reacts to the SALT report.....it seems odd that they wouldn’t follow up a risky situation once it’s brought to their attention.
I had a long chat with my son and his wife on the phone last night. I told dan that I’m at the end of my tether, I feel guilty about being complicit with what’s going on- BUT I’ve decided to stop those guilty feelings right now. You are right, after providing a really good support for my father caring for my mother over 13 years has to be enough. I don’t feel guilty any more.
I have decided to stay as strong as I can - I met a friend for coffee today and ended up with a huge hit chocolate thing with whipped cream and a mince pie!!! I really don’t know how that happened!!!
I munched cake ! guilty pleasure!
enjoy & make sure you keep walking this path
Xx
 

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