Over the weekend, I wrote about a eureka moment, putting my mum's breathlessness down to a faulty nebuliser. Well she has had 3 and half days of a fully working one and is no better at all. As well as her four prescribed nebulisers a day, of ventolin and respontin, she has been having extra ventolin nebs.
The matron, who came on Friday, said the extra ventolin was fine and as she was wheezy upped her steroids to 30mg. My mum has felt more breathless since last weekend, so she started her rescue antibiotics ( co amoxyclav ), and finished the course on Friday.
Saturday just gone and she was dreadful, she couldn't even stand without gasping for breath, so I gave her an alternative antibiotic, just in case there was an infection, ( I don't think there is ). Although she isn't quite as bad as Saturday, there has been no significant improvement and our matron is away until Wednesday. I will try and get her to agree calling GP out tomorrow if she is still crap.
I don't know what else can be done to improve her breathlessness, and I am so scared that this is going to kill her. She is now just receiving palliative care and I know she's not going to live for the next ten years, but I'm not ready to lose her yet.
She doesn't want to go into hospital as there is nothing they can do there that can't be done at home, apart from iv antibiotics, and if she hasn't got an infection now, she will have if she goes in. Her consultant said if she has bad exacerbation, she needs to be hospitalised to have her oxygen levels monitored, but last time she was in, she was on a bloody surgical ward where the staff didn't have a clue about copd, and she was lucky to have her sats checked every four hours. We have a sats monitor at home, so I can do that.
She wants to die at home, and I am scared if she has to go into hospital, she won't come out. I am determined for her to have what she wants, but that may mean a premature death.
I just don't know what would be the right thing to do. She's so very tired, is it kinder to let her go than try and get her back to how she was a fortnight ago.
If you reply to my post and I don't respond, I am not being ignorant, but I will be around at my mums house but I will reply tomorrow
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Poppin
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Please dont worry about replying take care of you and your mum. I cannot offer advice but can only say I am thinking of you both and praying for you too God bless xxxx Julie
It's so hard Poppin. There is no right or wrong answer. I think you know what is best for her. If that means a shorter life, is that so bad considering how she is?
You are the only one who can make the decision but whatever that is, it will be the right one and you will get full support on here.
Lynne xx
This is something for you and your mum to decide, but getting stressed about the possibility of hospital is not good for either of you. Rely on your instinct they are usually right.
My thoughts and prayers are with you.
Tina x
My heart goes out to you,your mum and your family,I pray you can get through this most difficult time,xx
Hang in there - it is so hard, I had to make those decisions with both my parents, but you will know that you did your best whatever happens in the next few days. Take care
Thanks Julie, and Lynne you are right about the shorter life. She is sick and tired of feeling like crap. Maybe it's time to let her go, but the selfish side of me wants her to stay, but that's for my benefit and perhaps it's unfair for her.
Thank you for the promise of support, it's comforting to know
Let mum have what she wants. It is so easy to do what we want. When my mum was dying in hospital she kept saying "Take me home Bob". I didn't do it and I have regretted it ever since. Put aside your own wishes and give mum the peace of her own home, it's where she will feel happiest.
Thanks Bobby, I know deep down you are right. Maybe part of me doesn't want to feel responsible for ' causing her death' in keeping her at home. Would I and others blame me for letting her die, maybe she would make good progress in hospital and live for another year.
In all honesty, I suppose her quality of life is so poor, why make her a little better just to sit in front of the telly because she can't do anything else.
So sorry for the situation you are in Val, I do hope something changes for your Mum so she can breathe easier and enjoy the wedding as she wishes this coming weekend.
Is it very humid in your house at the moment I wonder? I have humidity over 60% in my bedroom of late which has been affecting my breathing. I did buy a small dehumidifier and it is taking moisture out of the air and does help a little. Some research I did myself on this said the humidity inside the home for comfort is 50%. Sometime cooler air helps also, fan etc. but I expect you already know these things.
I think what every you do I am sure it will be the right choice for your Mum.
Sending special thoughts a prayers for you and your Mum.
My heart goes out to you hun, such a difficult time. Only you can decide and you are doing the very best for your Mum, along with the support of your matron. Don't worry about not responding. We are here for you Poppin.
Thank you for all your comments, they help to clarify things in my mind
Val xx
Dear poppin xxxx
I lost my mother-in-law and father-in-law this year, both suddenly.
After his very active wife died suddenly in the shower in January, my father-in-law didn't want to live in his house any more. He said that he'd like to move into the old people's home where he knew a few people. At first, his GP and others were against it because he was physically and mentally up to living in his house. He didn't want to though, and deteriorated quickly.
On a Tuesday in May we helped him move into the home he so wanted to live in. The next morning we received a phone call saying he had passed away in the night, his first in the home.
We were very comforted by the knowledge that he was comfy and warm in bed, in the place he wanted to be. On the day of the move his appetite had returned and he enjoyed a lovely big meal for the first time since his wife had died.
What I mean with all this waffle is, once a person has reached palliative care, I'd personally try to help them live in the place of their choice. Hospitals are not cosy, some people would rather be in a hospital because they maybe feel safer there, but I think a lot would prefer to be at home. If your Mum says she'd rather be at home, then if that is possible and manageable, that'd be the nicest thing to do for her. Maybe her time has come to pass on. Forcing people to live on past their time is cruel I feel.
I am thinking of you and wishing you strength at this very difficult and sad time. You are a wonderful daughter / son.
Koala I am sorry for your loss, it must have been so difficult for you.
You are right, I will try to keep her at home. This is where she feels most comfortable, and I am more than happy to care for her and that she is happy and comfortable with me doing it. She won't tell nurses how she is really feeling, and hates it if they have to help with personal hygiene etc., but she is more accepting of me doing it.
Oh I am so sorry Poppin. I know exactly how you are feeling because I have been through the same with my my mum. Its heartbreaking to watch your mother going downhill and not being sure of what to do for the best. The only thing I can say is that if your mum is capable of making decisions then as far as you can go with her choice. My poor mother wasn't capable of making her own decisions so we agonised over choosing for her. One thing I did learn was that whatever you do you always wonder if you did the right thing and guilt is something you just have to accept and live with. You can only do your best love. I am sure she knows you all have her best interests at heart and trust you to do right by her.
You must, and I speak from presonal experience, also look after yourself. You would be no good to her if you crack under the pressure so you need to keep yourself fit and able to deal with it. Don't be too proud to ask for help if your need it. If your mum does need medical attention then often a doctor or a nurse can provide this at home so try and arrange this. A district nurse should be available to visit on a regular basis There might be a very good reason for her to go into hospital but sometimes I think it is the cheaper option for them rather than doctor and nurses coming out. But stick to your guns!
It is very stressful watching the decline of a loved one - I know. And no matter how much you are prepared for the worst it is a hell of a shock and very traumatic when the end finally comes. I fell apart when my mum died last week even though we were expecting it and the strength of my feelings surprised me. I accept that I won't feel back to normal for some time. I am still shellshocked and overwhelmingly sad.
Having said that though your mum might go on for quite a while yet so make the most of the time you have left with her and build up as many happy memories as you can. They will be a great comfort to you.
I still have very mixed feelings - she didn't suffer and she died in peace and dignity but some part of me is relieved for her now she is gone as she had no quality of life left. And the family all thought you wouldn't treat an animal like that. But we do with people don't we?
I do really feel for you Poppin. (((((((Poppin))))))
I can tell you are having a tough time at the moment. Our Mums look after us when we are young and then we look after them when they get older. The only advice I can give is from my own experience and that is do whatever your Mum wants. I know we think we know best but the stress of your Mum worrying about going into hospital may be exacerbating the problem. At the moment just give her your time and love that can be better than any medicine. Sit and talk to her about happy times my Mum always seemed to relax more when remembering. Invite friends around of your Mums if possible and just let them sit and chatter (mind you not the morbid ones they wont help) and lastly take time for yourself.
I can't speak for your mum or anyone else but me personally, I would much rather be in my own home surrounded by own things when I get to the last stages. The thought of having to be in hospital at that time would be my worst nightmare. Stranger things have happened too where people rally and get better so don't give up hope. Keep well yourself too. xxx
I am so sorry about the situation you both find yourselves in. My father died of pneumonia in January so I have some idea of what you are going through.
I was wondering if the steroid tablets had helped your mothers condition, I know when I have an exacerbation I need extra steroids to balance the nebulisers, as the salbutamol alone is not enough.
I have had steroid injections as well if it gets really bad, has your gp seen her yet?
Thinking of you, I tried to post earlier but it failed , sorry
I am so sorry to hear your awful dilemma. I can only echo what other people have already said - try to look after yourself if you can. I hope that you are able to get the help you need. Take good care. with love and best wishes TAD xx
What would you want if it was you? So sad for you. Just love the time you have left and you dont yet know how long that will be. X
I do feel for you Poppin and understand how your mum feels about going into hospital. They are not always the best places, especially if you end up on the wrong ward. I am sending lots of love and good wishes to you and your mum. Just hang on in there and reply whenever you have the time. It is important for you to be at your mums side. Take care. xxx
So sorry to hear your news - it is something I dread with my Mum my only thought is hospitals are lonely places and home is home - go with your heart and you can't go wrong. Whatever you decide nothing is your fault you have done your best so do not beat yourself up - just be there for your Mum - who knows maybe she will recover - let's hope so - lots of love and hugs xxx
So sorry, have no advice except my sincere wish that your mother gets some relief, I do believe that your mothers wishes should be your guiding light... Adrian
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Don't know whether to be happy or angry :/
Lung function 20-25%, how bad is that and no oxygen needed
