Hi Lorraine,

It never rains but it pours. You must be finding it difficult to look after your mum with all that is going on in your own life recently. It is never easy caring for someone with dementia. We cared for my mother-in-law for 4 years. She had vascular dementia too, but was also bed bound with heart valve problems. This all started after she had one of the first Tavi procedures (to replace all of her heart valves) available in the UK. Sadly, she passed away last September.

My 97 year old father-in-law looked after her for as long as he could. She didn't want carers in the house, but we eventually had to bring some in, as it got too much for him to look after her 24 hours a day. It did take a lot of pressure away from him once the carers came in 4 times a day to attend to her personal needs. This was all arranged once we brought in a social worker. We saw her on the Friday and, by the Monday, she had got a hospital bed delivered, arranged for build up drinks and puddings to be delivered regularly, along with a regular supply of incontinence pads, emollients, wheeled trolley, dressings for her ulcerated legs, medicines delivered to home by the pharmacist. We were offered someone to sit with mum overnight, to allow dad to get some sleept, but he turned this offer down. Living in sheltered housing in a flat with just one bedroom, it seemed too invasive in terms of his privacy.

Having carers coming in regularly meant that she could get things like her hair washed, as my daughter and I found this getting progressively more difficult to carry out. Mum was just skin and bone and got sore if we tried to move her. When the carers arrived we invested in a special basin which we could use while she was lying in bed. Dad went into a day hospital at the beginning of February for assessment. We were told that afternoon that he had cancer throughout his body and that there was nothing that could be done for him. Five days later he passed away. We have just returned from holiday and, towards the end of our holiday, we were informed that my youngest brother-in-law, who lived in Kuala Lumpur was found dead in bed. He had never been ill and the doctors think that he died of natural causes. This was quite a shock. All in all we have had 9 family funerals this year, so we haven't had much time to think about ourselves.

A scooter was something that my mother-in-law never got used to. She had never driven a car and, had a tremour, which made it difficult to manouvre a scooter. This is something for you to think about before you get one for your mum. If her tremour is only mild, she might be able to control a scooter, but if it is more severe, she may have difficulty. The pressure used on the scooter controls need to be fairly even. If too much is applied you may find the scooter lunging forward and presenting some dangerous situations. The other difficulty, especially as your mum becomes more frail, is that it depends upon what your local pavements are like, as to how well she'll be able to cope. Many pavements do not have a dropped kerb and, I have had a scooter toopple over on me before now. You can hire scooters in most town centres now and, this is a good way to let your mum try one out before you buy one.

A scooter opens up so many opportunities. I use one myself, as I had to have both knees replaced after my cancer treatment and have a lot of problems with my back. This makes it particularly difficult for me to stand for any length of time. I also use a walker and, find the ones with a seat are the best ones for me, as this allows me to sit in shop queues or when I tire, which I do easily.

Does your sister live any nearer your mum than you? It is a fair drive from Aberdeen to St Andrews, especially in inclement winter weather.

Only another week to go now before you get your results. I am keeping my fingers crossed for you.

Kind regards,

Jolamine xx

Hi Nel , 

thank you so much for your kind words. I’m trying to be as positive as I can I know I will get through it . I think it’s just stress that I have every ache and pain . 

Take care 

j xx

Hi WL, 

delighted you got your chemo date . I got mine too it’s the 24th ! Hard to believe we are finished with chemo and both having surgery the same week ! 

Ive just been to my gp I’ve a chest infection hoping it won’t effect surgery date ! 

Wishing you all the best for your surgery. Let me know how you get on . 

Take care 

J xx

Hi [@Jolamine]‍ [@Woollylamb]‍ [@BigJean]‍ [@Loz]‍ 

hi all sorry if I’ve missed anyone. Jolamine can I just say what a truly inspirational lady you are. You carry me through my bad days just by reading what you are going through and yetvyou still seem positive and upbeat and always here for friendly advice.thank you x 

hope you all ok x I’ve just had round six of chemo only two more to go. Can’t wait. Struggling with pain in legs and knees and groin but taking painkillers regularly nurses said if continues to call and they will give me codine. Eldest son has suspected case of mumps so his staying away from home for abit. Nurses said nothing that can be done as been in contact with him before symptoms so just got to keep eye on temperature. Feeling tad low but looking forward to the good days. I know I’ve been quiet but I do read your comments and think of you all often x take care all 

that's good my mum has a prolapse and on pads too my mum refused careers I had phoned them told them she was struggling with meals carrying tea etc I bought her a tray as she complained the trolley on wheels was too dangerous and fast when she was pushing it going to phone occupational therapist see if they come up with something I see a big change in my mum I tell her a thing 2 days later she forgets or asks me again I could not believe it when she was staying with my sister but asking me why I needed a second breast operation explained again breast tissue needed to be removed I should hear from my surgeons secretary on Thursday or Friday giving me appointment for Monday or Wednesday that's his clinic days I'm trying to stay calm had to get my nurse to put in 2 stitches paper ones I burst my tissue scar @ bit lifting washing nurse was nice said no lifting patched up again lol you have had a time of it I'm so sorry you got such short notice with your dad god bless him your mum skin and bone that's the way my mum is going yes my mums hands shake so does her head you would think it Parkinson's disease but no hardening of the arteries in her head no cure just a dispirit to keep the blood flowing causes strokes she's had 3 and a heart attack last year not a big one but she's on heart pills too no my sister gets her daughters or son to drive up she used to drive but got bipolar so not allowed too now  we talk on the phone 3 times a week I phone my mum every day I discussed a scooter but there is a disability shop in golden square big shopping centre beside railway station was I get my treatment etc going to go with her to see if she could work one I'm in a bungalow neighbours brilliant quiet my legs are a big issue lyphodemena in my joints legs swell leg ulcer puffed up wrists too but becaus3 I'm on a wee slope and have 3 steps down my path need flat ground I got new doors on nice second hand doors mahogany nice instead of white panelled doors as it's too expensive getting in painter I used to be @ble to paint now I can't do skirtings bottoms of doors but I feel happier just wiping down doors easier for me in the winter have already prepared sand outside in my wee plastic box so if we get snow which Scotland is famous for just through sand down I use a walking stick my leg is closed but still compressed but not good enough yet for stocking I wear stocking on my right leg it's good of you to explain things to me my mum asked me to look for a good second hand scooter but no I want to see if she can work one first I can't get a scooter because of slope my name is down to get another bungalow but I don't really want to move then I 5hink will I cope god bless if I'm older it's a task ty for replying xx

Hi Mejules,

It is great to hear that my posts can help you through the bad day - thank you for that. I find that, by helping others, I don't dwell on my own problems so much, as other peoples' situations are often so much worse than my own.

I am off to see a neurologist on Saturday, as I have been struggling with seizures for the past couple of years and, have recently begun to get a strange 'waterfall' effect in the left side of my head. This works its' way down my neck, shoulder and upper arm and stops just above my elbow. My GP is not sure whether or not this is a side-effect of some of the medication I'm taking or, whether it is something more sinister - Let's hope that it's the former!

It's great to see you getting through your chemo and, I'm sure that you can hardly wait to get it all behind you. I'm sorry to hear about your pain and, hope that it settles soon. I hope that your son is getting over the mumps and, that he hasn't passed anything on to you.

I'm not surprised that you are feeling a tad low with all that you are going through.  You are fully entitled to be quiet too. Still, once all your chemo is behind you, here's hoping that there will be plenty of sunnier days ahead!

Kind regards,

Jolamine xx

Hi Lorraine,

What type of trolley was your mum using? We were provided with one with two shelves, which are raised at the edges to prevent spillage. It is on wheels, but it has brakes on the handles so that it doesn't run away. This was given to us by the OT. It is certainly worth asking your OT, as there are other trollies which might be more suitable.

I'm glad to hear that the nurse put in new stitches where your others had burst. Here's hoping that this is a lesson learned - no lifting means exactly that!

What a lot your poor mum has had to go through in the past year. You will probably find that her conversation tends to be repeated more frequently with the passage of time. It is such a cruel condition. I live in a bungalow too and am at the top of a steep hill, but I can still manage to use my scooter. With your legs giving you so much bother, it might be a good idea for you to try a scooter out at the same time as your mum?

Have you any idea how long the waiting time is for a new house? If you have been in your present bungalow for long and are happy there, it won't be easy to move, but it may be for the best in the long run.

Your new doors sound great. All of my doors are white and,  I know exactly what you mean about the painting.

I'm glad to hear that your leg is closed, even if not good enough for a compression stocking yet. You'll just need to be very careful not to knock it against anything, in order to give it a chance to heal completely. I hope that you hear from your surgeon's secretary by the end of this week and that you get your results soon now.

Kind regards,

Jolamine xx

Hi 

so my surgery went ahead as planned, i was I. Theatre for 10 hours! Recovery is going ok so far , got a temp and they don't know why and my right arm is sore where they took lymph nodes from. I was sat in a chair yesterday, they want me to do a bit of walking today. 
 

Wishing you well for tomorrow [@BigJean]‍ 

wl

hi jolamine. Sorry not been on mum was ill been busy doing her shopping cleaning the house etc I will be asking her ot if they have better trolleys ty I saw my surgeon yesterday I was it sleeping too well the thought of another operation terrified me with my low blood pressure etc but I knew it was good news no doctor or nurse with him smiled how are you said still a bit tender etc but fine good news no more cancer tissue you now have clear margins what a relief he said you will need chemotherapy I knew that jolamine  with the tissue being affected told him my hair fell out before but it grew back smiled also said you don't take periods now no 12 years ago I stopped spoke about I will get injections to prevent bone cancer like a flue jag I'm thinking don't know will ask my nurse Linda did not want to ask too much questions I knew he was busy radiotherapy is a must too then he sent a nurse she offered me leaflets said I did not really need them she said if you don't get a letter or call in 4 weeks phone back up here agreed she was really nice and my leg ulcer has healed too so it won't interfere with chemotherapy I kept compressing leg as it was still leaking clear fluid but now had off compression for 2 weeks dermatologist has kept me on antibiotics to make sure cellulites stays out my leg how are you my friend ? Ty for replying asking me your a kind person xx

Hi WL , 

omg 10 hours that’s a long time . I hope you aren’t in too much pain . I’m so glad it’s all over for you . Onwards and upwards that’s another hurdle done . I’m very nervous about tomorrow not sleeping great but I just keep telling myself this time next week it will be all over . 

Thanks so much for letting us know how you got on . Sending you hugs ️ ️

J xxxx