Please Allow Me To Introduce Myself....

[Phil40]

Hello Everyone. My Mum is 80, was diagnosed with COPD four or so years ago after increasing respiratory problems. At that time she lived in London. After a couple of hospital admissions for falls she was given an oxygen concentrator at home and some meds and pretty much left to it. I should add at this point I now know what should be the care pathways for COPD. I live on the south coast and mistakenly thought that between the health service and my brother who lived near her that her care was being looked after. I was wrong and she moved down here October 2015. I think I have just managed to get all the relevant services in place. The first time she saw a thoracic specialist was in May this year. She had the oxygen concentrator at home for 4 years or so without any regulation or checkups despite this being a prescribed medication. Her FEV1 is around 30% and she is struggling to breathe. My wife is a great support to me but I often feel quite alone with this as my brother is strange and shows no interest in helping mum and rarely visits. I have had to attend every appointment with mum to get her seen by the appropriate people. Every time I met the next 'health professional ' I had to explain the lack of care and they look at me like an over concerned moron usually until I pointed out the unregulated prescribed oxygen concentrator when sometimes they would realise I was not exaggerating. One of her GP's questioned a prescription request by the 'specialist ' respiratory nurse regarding lorazepam for when she is panicked and tried to give her an anti-depressant instead. But now I believe there is no one left to see anew so I am now watching her deteriorate and wonder how long she has left. It is awful for her obviously and I am finding it very hard too. I have never had more respect for people who care for ill relatives. I will have a look through the posts for advice and if anyone reading has anything to suggest I am grateful. Thanks

[Badbessie]

Does your mother have any form of care at home? Perhaps ringing the BLF advice line could help both you and your mother. They can give advice on the care that is available.

[mrsmummy in reply to Badbessie]

03000 030 555 during office hours.

[fcag2001]

Is she seeing a respiratory specialist? If not she should be. As her carer are you signed up for support re nurses and visiting specialist as well as other aspects of her care you may need very shortly. Can you Mother get out at all by herself even to walk even a little? This must be encouraged to help physical and mental health. Try the GP for the answers to more advice re your mothers treatment . If GP no good is there another one locally ? I hope you can make some progress. Take care of your self. It must be very tough on you and your wife etc. Good luck

[Lyd12]

You sound like a wonderful caring son. I am 83 and have bronchiectasis. I can't give you advice re your Mum's care needs but just wanted to say how well you are doing, just don't neglect your own health or your wife! I have three sons, two live very near, so far my husband who is 87, and I manage, but it is getting harder. My chief problem with the bronchiectasis is pain, also arthritis makes life difficult. You have made a good move coming to this forum, many helpful, knowledgeable people will be in touch. Best wishes to you and your Mum, Iris x

[Dedalus]

Hello and welcome to you and your mum Phil x

[carotopgal]

I just wanted to say welcome to the forum. I understand completely where you are coming from, as I went through all the carer issues with my mom as well before she passed of a stroke. She had Parkinson's with dementia as well as heart issues. It's hard...VERY hard! I had to juggle her care, working, & taking care of my family all at the same time. And taking care of me fell to the wayside. Fortunately, at the time I had a wonderful boss that never hesitated to let me take off work to take her to all of her doctor's appointments. My sister lived away and my brother that lived only 5 minutes from us was of NO help. He maybe came by to bless us with his presence once a month. I have no great words of wisdom for you. I just know from experience that if you don't take care of you, then you won't be there to take care of her and your family. And don't get me started on doctors and all the pills they shove done the throats of elderly patients!! It was appalling and I started taking my mom off of many of her medications since I did research and found them to be adding to a lot of her problems. Each doctor didn't even take into account what she was already on before adding something else to it...UGH! Anyway, I digress. You will find so much information on this forum and a whole lot of caring folks to help you as you go through this. Gentle hugs to you!

[Phil40]

Thank you very much x

[Caspiana]

Hello Phil40 .

Welcome to the forum. 😊

I am really sorry to hear about your mum's condition. I know what it's like taking care of unwell family. My husband and I cared for his elderly parents. We lived with them for 18 years. His sister would breeze in once or twice a week with loads of advice and breeze out again conveniently after dinner which I cooked. At the time my children were still in school and we could never get her to come and take over so we could take the children on an outing. The feeling of alone is something many carers feel I think. I never resented taking care of them, but lonely I was, definitely. Even though I wasn't completely alone. Also there were very few opportunities for a break.

Eventually my in laws went to day care. I would work and come home in the evening and they were delivered by the service back home. I live in Japan and it's pretty common to do this. I don't know how it works in England.

Taking care of hospital appointments, keeping medicine sorted, preparing appropriate meals, dressing, bathing, cleaning, laundry it was very challenging (understatement) . People would say they didn't know how I did it. The truth be known these things were not a matter of choice. You do it because it's the decent thing to do. But sometimes it feels impossible. My mother-in-law's dementia eventually became so severe she'd escape the house and we would be looking all over the neighbourhood in the early hours of the morning. Or they'd be several toilet accidents a day. We simply could no longer manage. It was extremely difficult.

I don't have a solution for you with regards to caring for your mum as I know you know best. What I do know is that you need to gain access to any facilities that may be available to you like day care if you have it. Also, don't bottle up your loneliness or frustration. It will come back to bite you if you do.

I know I felt pretty angry with my sister-in-law back then. The feeling that it was totally unfair (it was) was constantly on my mind. However, now after the fact I am honoured that I had the chance to take care of two people who had showed me quite a bit of love and affection. Hang in there.

Wishing you well.

Cas xx 🌿

[Phil40]

Ohayōgozaimasu, go shinsetsuna kotoba o arigatō.

You honour me with your kind words.

You are right about not bottling things up and all that you said.

I am afraid I come to hate, a very strong word I do not use a lot, my brother for the way he is. I realise that it is not healthy for me to be like this but once Mum has gone I cannot see any reason to have anything to do with him or his equally horrid wife. I used to contemplate giving him a good slap or twelve but luckily I have a wonderful wife far more sensible than I who tries to help me act like a normal human being!!

Thanks for yours and everyone's help, not being alone is a wonderful feeling.

Ōku no kansha to saikō no negai,

Phil

[Phil40]

And I hope my Japanese was ok and not something rude or anything! A terrific language totally beyond me!

Sutekina tsuitachi o. Sayonara

Phil

[Roessner541]

Hi Phil I have COPD severe and I am 63. I usually feel okay when my saturation level is at 95 anything below 89 and I am breathless it usually doesn't go below 91 unless I am walking and if it does I stop and rest. Which can be often. But that is okay I don't have to be anywhere.does your mom have a lot of mucus if so you can use a nebulizer with salin a few times a day. My oxygen level was set at two but I have lowered it as my SATs has been consistently at 95. I take NAC to keep inflammation down. I had to be put on Daliresp because I was going to hospital so much. They had me on lorasapam for panic attacks but took me off recently because they said it can cause altztimer.