I feel devastated as Mum has become incontinent plus CH got Mum's meds wrong

[SarahL]

Dear All,

i haven't written for some time as I thought I was coping better. But yesterday I had the most terrible outpouring of grief. My poor Mummy is becoming incontinent and now I am absolutely gripped with grief, knowing that it's yet another stage of this horrible disease. I feel so broken. I can't seem to get a hold on myself, I have cried so many millions of tears over the years and I still cannot seem to process what's right in front of my very eyes. My Mum put her hand on my head too yesterday and told me she loved me very much. This broke me too as I have had years of abuse and nastiness aimed at me and she is still usually telling me when I go in 'what have you done to me' and 'I want to go home, you had no right to do this....etc'. I suppose it doesn't help that I don't have anyone in my life to go through this with and I have to be strong for my daughter. I seem to build up inner strength all the time and I know I'm strong but I can feel my resilience slipping away. I'm supposed to be going back to uni in September for my third year on my social work degree but I'm scared I won't be up to it or that something worse will happen to Mum and I just can't cope mentally. Does anyone know what happens once incontinence begins, in terms of other decline/progression of the disease? Lastly they called me from the care home the day before yesterday to say Mum's medication had been given wrongly which upset me greatly as they don't know for how long but they have rectified it now and had the doctor in. This has probably caused some of the upset as I want Mum to be as comfortable as possible and safe plus I also wonder if that could have caused the incontinence. Does anyone have any ideas on that? Also I would like to bring Mum out for the day but don't even know if she's able to do that now, does anyone have any thoughts on whether that's a good idea. Thank you. So so sad.

 

[TinaT]

Dear All,

i haven't written for some time as I thought I was coping better. But yesterday I had the most terrible outpouring of grief. My poor Mummy is becoming incontinent and now I am absolutely gripped with grief, knowing that it's yet another stage of this horrible disease. I feel so broken. I can't seem to get a hold on myself, I have cried so many millions of tears over the years and I still cannot seem to process what's right in front of my very eyes. My Mum put her hand on my head too yesterday and told me she loved me very much. This broke me too as I have had years of abuse and nastiness aimed at me and she is still usually telling me when I go in 'what have you done to me' and 'I want to go home, you had no right to do this....etc'. I suppose it doesn't help that I don't have anyone in my life to go through this with and I have to be strong for my daughter. I seem to build up inner strength all the time and I know I'm strong but I can feel my resilience slipping away. I'm supposed to be going back to uni in September for my third year on my social work degree but I'm scared I won't be up to it or that something worse will happen to Mum and I just can't cope mentally. Does anyone know what happens once incontinence begins, in terms of other decline/progression of the disease? Lastly they called me from the care home the day before yesterday to say Mum's medication had been given wrongly which upset me greatly as they don't know for how long but they have rectified it now and had the doctor in. This has probably caused some of the upset as I want Mum to be as comfortable as possible and safe plus I also wonder if that could have caused the incontinence. Does anyone have any ideas on that? Also I would like to bring Mum out for the day but don't even know if she's able to do that now, does anyone have any thoughts on whether that's a good idea. Thank you. So so sad.

My husband was incontinent and in a care home for four years. When I wanted to take him out I ensured that I had all I needed to 'clean' him up. I also bought pull up paper type incontinence pad 'knickers' which I could tear apart from the side whilst he was wearing them so were easy to take off (even when dirty).

I went to my local council and obtained a disabled toilet key. Using the disabled toilet usually gives enough room to use a wheelchair and enough room to clean the person.

Good luck. It isn't the end of the road by any means and life still goes on with the presence of incontinece.

xxTinaT

 

[marionq]

Sarah life with dementia is tough - no argument about that. But you have a daughter and the possibility of a degree and a career. You need to compartmentalise ie these good things in your life should be your main focus. Your Mum is safe and all the crying in the world will not cure dementia.

I am a bit worried that you are overwhelmed by it all. You need more positive influences in your young life. Probably a good holiday if you can afford it would be a start to let you think things through objectively.

Good wishes.

 

[Mrsbusy]

Sorry to hear about your situation, it's hard to deal with it I know. My mum was a lady who had a reputation for always looking immaculate, red shoes red bag type thing. Now her hair hardly gets sorted out, she sometimes shuffles and her nails are now awful. She is also incontinent both ways too.

What you need to realise is that like me, it's more upsetting for you to see her in this situation, and like you it hits me like a hammer, everything that she loses that she could do. She isn't aware of it probably as she just sees it as normal. My mum was great with advice with my children, but now she thinks I'm amazing because I can cook mushrooms in a pan! I miss my Mum how she was everyday, phoning me, shopping with me etc.

The thing I miss most is the feeling of when I go to my parents house, it's to do jobs, I now dread going but do so most days, and try to help as much as I can, but I so miss the days I visited them as a daughter not just the person who sorts everything out, taxi driver etc and they have little interest in me or my son as people.

Think of how proud your Mum would have been when you get that degree and if you get a job in social work this experience will help you to help others and wouldn't your mother had been so proud of you to have that ability.

If like me money is tight, try just having a day out, even just a picnic something out of the ordinary, as it really recharges your batteries for the next battle. Be kind to yourself.

 

[Pattywicklow]

Hi Sarah

It's so so tough and you sound like you have a lot on your plate. For your mum I would start with seeing if there is an admiral nurse for your area. Google it , they on the dementia uk website.

If not ring their help line, they give great practical advice, help u think thru things objectively. Next the care home should have access to a GP you should be able to speak to, they maybe be able to explain and also perhaps speak to a pharmacist who will be able to tell u about the drug overdosing effects....could that be relevant to continence? The Dr should be able to discuss the effect of that overdose on yr mother. Your mum may / should also be under an adult mental health team and you should contact them, yr mum still has a right to the care of the NHS.

You are doing a great thing in tacking a degree, but if u are overwhelmed and go under that's no good for u yr mum or your daughter so maybe have a chat with the uni to see what support / break / carer arrangement they could suggest.

I know it's all plate spinning and u feel if u stop anything disaster will ensue .... It won't but you need to buy yourself some headspace.... And also go to yr GP and see if they can help. Carers groups maybe too. I know those suggestions are all time consuming and confusing but see if you can at least call admiral, then take it step by step. It is an appalling disease and breaks every fibre but as u say u do have resilience a lovely daughter and a career when u get that degree, so hang on in there. I'm at a v low ebb myself my mum calls out do they've basically kept her in her room for a week - horrible.


Keep going x


Sent from my iPad using Talking Point

 

[Beate]

I agree that dealing with incontinence is tough. My OH is doubly incontinent, I had to buy loads of mattress covers, Kylie sheets and pull-up pants, do a lot of washing and cleaning him up, and I can only go to holiday places that have a laundry service and can deal with it.

But in your case your Mum lives in a care home and they should be taking care of all that for you. You can still take her out, just make sure she wears pads and maybe only go out for a few hours. If she wets her clothes while she is out, don't make a big deal of it, the care home staff will clean and change her on your return. I still take OH out to places, including the cinema. It's all manageable and life doesn't stop, so please stop crying.

If you think you can't get a handle on it, please look into counselling to combat your feelings of stress and grief. You could ask the Alzheimer's Society or your GP whether there is a service in your area. At the moment I am seeing a counsellor that works with the Carers Centre specifically for carers. The sessions are free. It really helps to just sit and talk sometimes and get it all out, while constant crying will just wear you out even more.

 

[AlsoConfused]

I too find dealing with incontinence very, very difficult to deal with and it was a major blow when Mum started needing to be "cleaned up". There didn't seem to be a close connection between the onset of incontinence and any big step downwards in Mum's overall functioning.

Perhaps you could 'phone ahead of visits and ask whether your Mum could be changed before you take her out?

 

[SarahL]

Sarah life with dementia is tough - no argument about that. But you have a daughter and the possibility of a degree and a career. You need to compartmentalise ie these good things in your life should be your main focus. Your Mum is safe and all the crying in the world will not cure dementia.

I am a bit worried that you are overwhelmed by it all. You need more positive influences in your young life. Probably a good holiday if you can afford it would be a start to let you think things through objectively.

Good wishes.

Thank you Marion, every time I feel I'm moving forward something else seem to get in the way and I'm afraid I'm losing the fighting spirit. Take care x

 

[SarahL]

I too find dealing with incontinence very, very difficult to deal with and it was a major blow when Mum started needing to be "cleaned up". There didn't seem to be a close connection between the onset of incontinence and any big step downwards in Mum's overall functioning.

Perhaps you could 'phone ahead of visits and ask whether your Mum could be changed before you take her out?

Thank you, it's good to know that overall functioning didn't drastically change with the onset of incontinence. I think I went into meltdown thinking she was going to be completely different and I didn't have time to adjust. The care staff at the home were wonderful with me the day after and I feel a little more calm now. I hoe your Mum is ok and thanks for your support and input.x

 

[SarahL]

Hi Sarah

It's so so tough and you sound like you have a lot on your plate. For your mum I would start with seeing if there is an admiral nurse for your area. Google it , they on the dementia uk website.

If not ring their help line, they give great practical advice, help u think thru things objectively. Next the care home should have access to a GP you should be able to speak to, they maybe be able to explain and also perhaps speak to a pharmacist who will be able to tell u about the drug overdosing effects....could that be relevant to continence? The Dr should be able to discuss the effect of that overdose on yr mother. Your mum may / should also be under an adult mental health team and you should contact them, yr mum still has a right to the care of the NHS.

You are doing a great thing in tacking a degree, but if u are overwhelmed and go under that's no good for u yr mum or your daughter so maybe have a chat with the uni to see what support / break / carer arrangement they could suggest.

I know it's all plate spinning and u feel if u stop anything disaster will ensue .... It won't but you need to buy yourself some headspace.... And also go to yr GP and see if they can help. Carers groups maybe too. I know those suggestions are all time consuming and confusing but see if you can at least call admiral, then take it step by step. It is an appalling disease and breaks every fibre but as u say u do have resilience a lovely daughter and a career when u get that degree, so hang on in there. I'm at a v low ebb myself my mum calls out do they've basically kept her in her room for a week - horrible.


Keep going x


Sent from my iPad using Talking Point

Patty thank you so much, that makes me feel a bit calmer. I sometimes see everything so black and white that I cannot see a way forward. I'm sorry to hear you're at a low ebb too, i feel so much for you. I hope your Mum is ok, it's such a horrible disease isn't it for our poor Mums. xxx