Does my elderly mother have to be left to suffer like this?

[whatsupdoc]

hi everyone, I'm new here and I'm so glad to have found this wonderful community.

I would seriously appreciate some advice please, I care for my 80yr old mother 3 days a week.id love to be there with her more just I have 3 teenage kids, and just dealing with the ups and downs of family life makes it hard going .I don't drive and I have to catch a bus which takes about 40 minutes to get to her. 5 years ago my mum had a stroke which left her with out any use of her let side..she can walk with an aid of a walking stick.just her arm is of no use..recently she has been diagnosed with copd and heart failure.

she is able to get about the house but as time has gone on she is totally house bound. Her copd is so bad that she gets out o breath easily and going from her house to get into a car to travel is impossible. the problem I have is that at night she is exhausted but she gets woken up finding it difficult to breath. When she is able to breath normally she cant go back to sleep no matter how tired she is. It scares her to go back to sleep because she knows she will have breathlessness .

I have asked for her to have oxygen .she has had it during hospital stays.i know that oxygen can makes things worse too. The doctors wont prescribe any and she cant get to the hospital.im sure she can be assessed at home.so after reading my long story { sorry} what I need advice on is our doctors are not much good and she has a nebulizer but what about oxygen for the night or anyone with any advice on what more can be done .she has anaemia and she is just so exhausted its making her depressed.

[Hidden]

Wow, you have a lot on your plate! Have you contacted Adult Social Care? They should be able to arrange for someone to come to see if they can provide any aids for her to make her life easier. Would it be possible for her to live with you or near you. Moving her would be hard - you'd have to do everything but then you and your kids could pop in and out all the time.

Don't forget you can ask for her to see a specialist about the breathing and ask for hospital transport to organise how to get her there.

[whatsupdoc in reply to Hidden]

thanks for replying it means a lot. I would love to move closer and for her to live with me. Sadly I cant do either of these, I cant move as my kids are doing their exams plus id be moving them away from their friends. I have no room for her at mine plus my mum is very stuck in her ways and she would no doubt dislike living with me , she dosent like my area and I think my dog wouldn't be best for her health.i will try adult social care though thank you.

[Jennymary]

My heart goes out to you, your mum and the family. What a difficult situation you find yourself in, does your mum have any specialists helping her with her health (not GP) who maybe able to get some more help for her, also, are you the only person caring for her, if so, I feel that you should try and get extra help, maybe through social services, as with your own family to look after you have plenty to deal with, I'm sending you and your family loads of love x

[whatsupdoc in reply to Jennymary]

Thank you jennymary for the warmth that came with your reply .My mum has a gp just lack of doctors in the surgery .I find the doctors are stretched to their limits as to what they can do. The number of times I have called them on the phone to ask advice only to be told to deal with it in a nice way. I am the only one that cares for her even though shockingly i have an older sister who lives opposite my mum. Yet she does very little and when she does visit she is there 5 minutes and off she goes. She has very little patience wih my mum and can be short tempered with her. my brother has not long passed away and my mum is dealing with it in her own way. Part of her understands but she shuts out a lot too, I will try for extra help thanks again

[Poppyboo5 in reply to whatsupdoc]

I have been very touched by your letter and how you care and are aware of your mothers feeling and needs through a difficult time for both of you. Your mum needs assessed by social services to determine your needs and hers. You then should be reffered to the council, as they have care packages for people like us. I'm only giving you the process I had to go through as my partner cares for me full time and how they could help me and my partner to get help and support either through carer support, financial benefits to pay for your mums care. I hope I didn't just rant on and you found this helpful. I hope you get the support you need you deserve it.

[jaykay777]

I don't know whether you have home hospice services in the U.K., but if you do, you can ask your mother's doctor if it would be appropriate for your mother. My late husband, a non-smoker, had COPD and heart failure. Hospice provided him with 24/7 oxygen equipment, making it easier for him to breathe and to sleep well at night.

[whatsupdoc in reply to jaykay777]

Thank you jay kay i will find out about this ,did the doctors ever try to avoid giving out oxygen ? also did oxygen make life easier .. sorry i hope you don't mind me asking .

[Hidden]

Hi whatsupdoc. Don't apologise for asking for advice, that is what we are here for.

[jaykay777]

I don't mind your asking and I don't think others do either. I haven't heard of doctors trying to avoid prescribing oxygen when the patient needed it to function. Supplemental oxygen helped my husband breathe when his lungs hardened from COPD and he could no longer breathe on his own. He had never been a smoker. For many years, people requiring supplemental oxygen to stay alive were confined to bed in oxygen tents. They didn't have the freedom to move about their homes or travel as people do today with oxygen tanks.

[Molliemoxie]

My mother was admitted to hospital with low oxygen levels

Spent a week in hospital doing tests

Was discharged with oxygen installed in her house

She as careres 4 times aday to assist with her needs and a very caring family who see her every day 85 yrs old

[Dozeycat]

What triggers your mum's breathlessness at night? Is your mum frightened of being on her own an so exhausted that she may not be able to call for help? Is there anything you can do to improve her confidence overnight, a community alarm, key safe to allow access to her overnight? Commode by the bed ? A flask of tea? A phone with big numbers easier to use at night. Sometimes reassurance, knowing there is someone out there ,can be enough to settle a person.

Fingers crossed

[Alisue]

I really feel for you as I experienced the same with my mother, it’s so hard to deal with, in my area themacmillan nurse was involved and the community matron, they advised help from social services, but also helped with symptoms such as breathlessness and anxiety which are so relevant for your mum, your GP should know and could refer your mum, I really hope you get help very soon, it’s so hard for you all best wishes sue

[Roessner541]

She needs to be accessed for oxygen which is usually a six minute walk test if her oxygen drops to 89 she probably qualifies for oxygen.

[Paparoachgirl]

Hi,I have COPD and have a inhaler called Fostair. I don't have it as severe as your mum but have had a couple of episodes where I've had to call a paramedic out and have had a nebuliser which really helped. The GPs aren't a lot of good because I actually saw a nurse who diagnosed COPD as she thought I had asthma. I'm still not sure if it is COPD to be honest. Surely your mum would be able to have oxygen pray least have a review? She should be having a review every 6 months with a doctor and getting further treatment. Some GPs don't seem to want to bother sometimes!

[sjg15]

Hi whatsupdoc, my mum has parkinsons and has various related problems, we have found that when she is ill then phoning 111 is very helpful, they are very good at assessing if she should be referred to hospital or out of hours clinic or the GP, I recommend them. Hopefully when your mum has an attack she can be referred in to hospital and they can do the tests she needs. In our experience GPs just don't have the breadth of knowledge to spot some diseases and with older people the doctor will put things down to old age when that's not necessarily the case.

[secrets22]

Oh I do feel for you,it is such a difficult situation,and having also lost your brother is hard for you and your mother,and when a mother loses a son it leaves such a void which is hard to contemplate,and on top of that you must be exhausted.

I really feel useless that I cant offer any tangible advice,but my heart goes out to you,your mother and your family.