Hi Simon,

I am glad that you understand about treatment. I find that it is better to let your mum and her doctors to decide whether or not she wishes or is fit enough to keep fighting. We all want to have our loved ones with us for as long as we can, but don't want to see them suffering unecessarily.

It is helpful for all of you when she believes in the afterlife. My mum did too and I have always believed that she is still watching over us. I have found it helpful to try and reach all the goals that she had wished for me and my family. This has given me a goal in life since she passed, as I know that she would not want me to be sad all of the time. 

I keep a photograph of mum in a prominent place and often talk to her as I pass by. Many of us find that this helps.

I am hoping and praying that your mum gets home soon.

Kind regards,

Jolamine

Hi Simon,

It is so difficult to watch a loved one suffer, especially when you know that it won't increase their chances by much. It is so hard to do what your mum wants, whether or not you agree with this decision, but it is the best way.

Can I be very rude and ask what your medical problems are and, will you still be able to live independently after your mum has passed? This is a personal question and, you don't have to answer it if you don't want to. I just worry that there may be other contingencies to be considered in the meantime.

I am sure that your photograph will help greatly. Although you want as many memories of your mum around as possible, remember that you don't need to create a shrine. Many of these memries , you carry in your heat and always will. It is not always healthy to have too many physical reminders around you, as you will also have to eventually move on with your own life. This may sound harsh, but I am sure that this is what your mum would want.

I hope that you don't find me too frank. I tend to tell things as I see them and certainly don't mean to upset you.

Kind regards,

Jolamine 

Hi Jolamine, yes I do understand it's my mum who's important here. She needs to do what she can but when she's not strong enough she needs to be able to go peacefully hopefully. That's not rude, it's fine. I have an undiagnosed condition with severe dizziness. Basically I've had many tests over the years and they could never find out what caused it. It  affects me as I can only have my head in certain positions without causing the dizziness to flare up. My mum has always looked after me and done as much as she can. I am managing to do as much as I can but my sister does come round to help with the house as it's too much for me to try and look after everything. If I do something or clean up I usually need to have a rest after until my head has settled down. I am unable to work or drive and just go out when I have too as it's quite difficult. I do manage if I have to go somewhere though as long as it's not for too long.

I do understand what you mean, my first thoughts are to have as much stuff aroumd me as possible but I know that might not help in the long run. My thoughts are everywhere, I don't really know what I want. I just want my mum here but I know that's not going to possible at some point. That's fine Jolamine, it's helpful to speak to someone who understands what I'm going through, to know that it's not just me who feels like this. I appreciate you helping me through this. Thank you. X

Simon

Hi Simon,

I am sorry to hear about your condition, but it sounds as if you could live independently with the help of your sister, or a home help. Your dizziness must be quite frustrating at times, especially when it remains undiagnosed. Does any medication help you?

Kind regards,

Jolamine xx

Hi Jolamine, it is very frustrating. As it's dizziness most people think just get on with it and I really would if I could but it is very debilitating. I would love to be able to do normal things but my head won't allow it. I even paid to go private and they still couldn't help me. I've tried to learn to live with it. I take an anti depressant through the day to help with anxiety and Diazepam at night to help me sleep. I really did struggle to sleep originally so I am thankful that these medications help me. I do think I would be able to live on my own if I had some assistance. At the moment I'm still at home due to my illness. My dad is here but he has his own problems. He's not very mobile so it would be me doing most things. I would be able to manage with help though, I'm sure my sister will help out where she can. I think because my mum has always looked after me it's even more daunting to try and think about doing even normal everyday things. I have had to start doing more things since she became ill and I am finding despite the fact I have some bad dizzy spells and have to stop I have been managing for the most part which I am grateful for. Thank you Jolamine. X

Simon 

Hi Simon,

I can only imagine how difficult this must be for you. Have you had any recent investigation for this problem? Scans and tests have come a long way in the past 18 years and, it might be worth re-visiting the problem to see if you can get any answers now. I have problems with dizziness myself, so know how debilitating that can be.

I can understand how much worse this all seems to you, when your mum has been caring for you and your dad all this time. It would be one thing to care for yourself, but quite another when you'd have to care for your dad as well. It is great to hear that your sister will help out where he can, but will this be enough for you?

Sorry to raise these questions, but I always like to be prepared for any eventuality.

Kind regards,

Jolamine

Hi Jolamine, sorry to hear you have dizziness problems as well. It's really frustrating isn't it, people don't quite understand when you say you are dizzy. They think what's wrong with you. I did have prolonged tests over a couple of years and they couldn't pinpoint the problem so they more or less said carry on there's nothing we can do. I do try and carry on with it as best as possible. It may be time for me to be rechecked at some point though. Maybe something new can be done. My doctor always seemed to think I had checked everything and there was nothing more they could do.

My dad is able to do certain things but he is limited. He has had 2 strokes so he isn't really safe as far as cooking or anything like that. We were looking at getting carers in for him but he decided he doesn't need them. I believe he does but I can't make him do it if he doesn't want to. I think if he does get more ill he will realize there is no choice for him. My sister is very helpful, she does have her own family though so she can't always be here. I am managing to get by on my own though. I just have to limit what I do. I was looking after my mum before she went into hospital and I did struggle a little more then. I feel like there is less to do now. I think that's because I'm so worried about her when shes here I'm trying to look after her. I think I let the stress get on top of me as well. Hopefully when she can come home I need to relax more. I can feel myself on edge constantly worrying and I know that doesn't help anybody. Thankyou. X

Simon 

Hi Simon,

It might well be worth getting things checked out again, as medicine is advancing all the time. If your dad doesn't want carers in perhaps you could get them in on your behalf? If you are having dizzy spells too, it cannot be too safe for you to do the cooking any more than for your dad. Although it is great that your sister helps out all she can, it isn't really fair to depend upon her totally when she has her own family to take care of.

You may find that there is a lot more to do when your mum comes out of hospital, so it might be worth revisiting the subject of carers with your dad in this respect. Instead of having to do the more mundane tasks, this would give you more quality time to spend with your mum and, this is so precious at this stage.

Kind regards,

Jolamine xx

Hi Jolamine, yes it's definitely something I'm open too. The only difficulty is travelling as these tests are usually quite a distance away from me which in turn affects my head again. I know I will have to do this though if I want to get anywhere with my condition. I generally know when I will have the dizzy spells so I can usually stop when I need to. It's more like once I start feeling it then I have to rest for most of the day and see how my head feels the next day. I think I can manage most bits, I just can't stand up for too long or that usually makes it worse. My sister is busy and she does have her own business so I know she cant always be here. 

I think you are right, I'm not sure how it will be. I would definitely imagine there will be a lot more to do. The caring will be more full time than before. I will try and ask him again, he just shut down the idea completely stating he doesn't need them. He's trying to prove his independence and sits on tablets and computers all day. He has bad legs which need checking as he's prone to infection and he doesn't do it. He will end up very ill himself if he is not careful. He had an infection last time in his leg and ended up in hospital. My mum used to look after him but she has had to stop since she got worse. It's really tough at the moment. I just want my mum to get out of hospital, she's not happy there and no one has really told us how she is doing. It's so frustrating with covid, I just want to see her. She sometimes gets confused and I don't know whether it's the medication or the cancer. They said they will reassess this week and tell us what's happening. You just get that constant dread feeling in your stomach. Every time I wake up I think how will I get through today. I know I will but it is hard. Sorry to go on, I just feel like I have so many things happening and it's hard to stay in control. Thank you for listening Jolamine, it's very kind of you. X