The horrors we see

[Marsupial15]

Hi all,

My mum is still relatively young to be suffering from Alzheimer's (just 67) but is very much in the severe stages and was admitted to a care home last year. We are in the process of reviewing her medication but she's not good - very upset and agitated most of the time. I couldn't love my mum any more, but to be honest visits are just horrible. The things I see and experience most times I go are just heart wrenching and I know that many of you forum members will sadly go through the same thing each time you visit a loved one.

What I would like to know is how do you deal with it?!

On a daily basis I can cope no problem - I visit, I have a quick cry in the car on the way home and life carries on. BUT. I just feel this distance creeping in between my friends and I. They are all very well meaning and ask how mum is and how things are going but I never really know what to say. I tell them if she's having a good phase or a bad phase, and all the practicalities like the joy(!) of trying to get CHC funding, but find I can't tell them the horrors that I really see and go through. They just wouldn't understand and there's nothing really to be said. I feel like I have a huge secret hanging over my head. And it's so relentless - it's not like I can have a sad story one week and after some positive words of encouragement report back that things are improving, they aren't and they won't, and given her young age it's likely to continue this way - or worse - for many years to come.

Does this make any sense?! Does anyone else know what I mean, and if so how do you deal with this?

Any shared experiences very much appreciated!

 

[Sisu50]

Hi all,

My mum is still relatively young to be suffering from Alzheimer's (just 67) but is very much in the severe stages and was admitted to a care home last year. We are in the process of reviewing her medication but she's not good - very upset and agitated most of the time. I couldn't love my mum any more, but to be honest visits are just horrible. The things I see and experience most times I go are just heart wrenching and I know that many of you forum members will sadly go through the same thing each time you visit a loved one.

What I would like to know is how do you deal with it?!

On a daily basis I can cope no problem - I visit, I have a quick cry in the car on the way home and life carries on. BUT. I just feel this distance creeping in between my friends and I. They are all very well meaning and ask how mum is and how things are going but I never really know what to say. I tell them if she's having a good phase or a bad phase, and all the practicalities like the joy(!) of trying to get CHC funding, but find I can't tell them the horrors that I really see and go through. They just wouldn't understand and there's nothing really to be said. I feel like I have a huge secret hanging over my head. And it's so relentless - it's not like I can have a sad story one week and after some positive words of encouragement report back that things are improving, they aren't and they won't, and given her young age it's likely to continue this way - or worse - for many years to come.

Does this make any sense?! Does anyone else know what I mean, and if so how do you deal with this?

Any shared experiences very much appreciated!

 

[canary]

You are right, friends just dont understand unless they have been through something similar. If you tell people they frequently dont believe you, or at least think that you are exaggerating. Fortunately, you can us what it is like - we understand and it doesnt have to be your secret anymore.

Several people have started threads so that they can tell people about it in an ongoing manner. Would doing that help, perhaps?

 

[Sisu50]

I am so very sorry to hear about your poor mum. My mum has advanced alzheimer's and everytime I go to see her it breaks my heart but my mum is 86.... it is far worse for you with your mum being so young. Your friends are probably only young and have not had the experience yet of knowing someone with alzheimer's so it is almost impossible to understand something like this if you have not had personal experience of it.

I am fortunate in that my friends and I are closer to your mum's age so my friends have almost all had some experience of it, either through relatives or friends of their own.

I would not wish anyone to have to go through visiting care homes even though the one my mum is in is absolutely excellent..... and now I only go once a week because of the emotional stress it is causing me and my mum does not know me anyway........so I am not sure she benefits from my visit at all. I am so lucky that one of my friends comes with me every time and is there to comfort me when it all gets too much.

Take care of yourself, it is heartbreaking for you.......

 

[Marsupial15]

You are right, friends just dont understand unless they have been through something similar. If you tell people they frequently dont believe you, or at least think that you are exaggerating. Fortunately, you can us what it is like - we understand and it doesnt have to be your secret anymore.

Several people have started threads so that they can tell people about it in an ongoing manner. Would doing that help, perhaps?

Thanks so much for taking the time to reply. This is a great suggestion and it is really helpful (although very sad!) to know that other forum members experience similar things. I'm not sure I feel ready to document how things are going on an ongoing basis, but I could definitely make more use of the forum, both in terms of posting posts and also replying to others. It's a great source of comfort for sure. Thank you.

 

[Marsupial15]

I am so very sorry to hear about your poor mum. My mum has advanced alzheimer's and everytime I go to see her it breaks my heart but my mum is 86.... it is far worse for you with your mum being so young. Your friends are probably only young and have not had the experience yet of knowing someone with alzheimer's so it is almost impossible to understand something like this if you have not had personal experience of it.

I am fortunate in that my friends and I are closer to your mum's age so my friends have almost all had some experience of it, either through relatives or friends of their own.

I would not wish anyone to have to go through visiting care homes even though the one my mum is in is absolutely excellent..... and now I only go once a week because of the emotional stress it is causing me and my mum does not know me anyway........so I am not sure she benefits from my visit at all. I am so lucky that one of my friends comes with me every time and is there to comfort me when it all gets too much.

Take care of yourself, it is heartbreaking for you.......

Hi there and thank you so much for replying, I'm really sorry to hear about your mum. Yes, we are all only in our 30's so luckily (in many ways) friends don't a huge amount of experience of this horrible disease. I too have started to limit my visits to once a week - I have a toddler and am expecting another baby and find it quite physically and emotionally draining and like you, I'm not really convinced mum really benefits from my visits any more. I'll never stop going but I think on a very bad day she barely even sees me! You are very fortunate to have a friend come with you on visits, I wonder if I might ask one of Mum's friend's if they would come with me when I go. I don't think there are any that visit weekly but even if I had company once a month it would make things more bearable I think. Thanks so much again for your lovely comment and support, it really does mean a lot. Best wishes.

 

[Sisu50]

Hi there and thank you so much for replying, I'm really sorry to hear about your mum. Yes, we are all only in our 30's so luckily (in many ways) friends don't a huge amount of experience of this horrible disease. I too have started to limit my visits to once a week - I have a toddler and am expecting another baby and find it quite physically and emotionally draining and like you, I'm not really convinced mum really benefits from my visits any more. I'll never stop going but I think on a very bad day she barely even sees me! You are very fortunate to have a friend come with you on visits, I wonder if I might ask one of Mum's friend's if they would come with me when I go. I don't think there are any that visit weekly but even if I had company once a month it would make things more bearable I think. Thanks so much again for your lovely comment and support, it really does mean a lot. Best wishes.

 

[Sisu50]

Hello Marsupial15, I really cannot imagine how difficult it must be for you with a toddler and being pregnant and all the energy, that in itself, requires.
Perhaps you could limit your visits to once a fortnight for a while and on the week when you don't visit ring the home, ask how mum is, and ask them to give your mum your love. It is really important that you put the wellbeing of your children and yourself above all else. If your mum had capacity I am sure she would agree with me. You will be no good to anyone if you wear yourself into the ground. I know this is very easy for me to say and I am absolutely no good at taking my own advice, but our children's early days pass so very quickly and you have to make the most of them. I am sure others on here will agree with me. I send you my very best wishes and love x

 

[Bubble82]

Sorry to hear about your Mum, My Mum was just 68 last month, so also young. When the Dr viewed her last year they said she was moderate, she'd also double incontinent.

Most of my friends seem to understand, as some have worked in care & with people with the disease, another friend's Mum has mental health problems, so most get it's not easy.. But I don't think everyone gets it, I don't think you can until you experience it.

A friend once asked me if I minded them asking how Mum was, I guess she didn't want to keep bringing her up if it was going to upset me.

I personally just think it's soul destroying, you go there & see your Mum who looks like her but sadly her mind isn't there anymore, it's sad. Especially when you know they wouldn't want to be here like this.

I do think talking helps, I like to have positive things - Like Holidays to look forward too, I think if I didn't I'd go insane.. But I've always loved holidays, that's me. Now we need them more than ever. It's so mentally exhausting. Husband has depression too, so it's not always great!

Sometimes though in all honesty when I see my friends I'd rather catch up on the good stuff and have positive things. This can get you down as we all know after a while. Saying that, having a nice balance does help.

Maybe your friends don't want to upset you by keep bringing it up. Sending you hugs.

 

[marionq]

I think time takes care of much of this problem. By that I mean that you just can’t keep dwelling on it or you would go mad. Gradually you drift into vague remarks like fine or not too good. I can’t bring myself to
Go into details any more although in the early years I needed to do so. At that time I think I could hardly believe what was happening to us so talked and sobbed whenever I was asked. Now I gloss over what is going on. We all need to deal with it as best we can.

Use TP to say what you need to say.

Good wishes.

 

[Distressed55]

I don't go into details, either. My friends parents are younger than my dad, and I don't want to frighten them about what may lie in store for them. Both they and I know that some of them may go through what I've gone through, and am still going through. So basically they support me in other ways rather than listening to all the dreadful details - help with the gardening, meals, and lots of hugs when I break down and cry (which is quite often). But if you need to let off steam, vent or rant, then use TP. Everyone here understands, can provide a listening ear, a shoulder to cry on, practical advice, and if you need it, a kick up the whatsit. You aren't alone any more. There are lots of us here. Talk to us, Marsupial15.

 

[love.dad.but..]

My close friends were very kind but none of them had first hand experience of dementia. They would ask how dad was I would say and perhaps overshare but then I felt it was boring for them ...my impression only...and they simply didn't know what to say that would help because frankly nothing could help or change dad's decline. They would sometimes try to make helpful suggestions but that just emphasised to me their lack of understanding of how grim and complex dementia was for dad for others and for their carers...it wasn't their fault why would they know...they hadn't seen dementia first hand and still haven't and I hope they never have to.

 

[vicx]

Hi all, I have coped so much better since joining TP. My mum is 73 and widowed with middle stages Alzheimer's. I have 4 children, 2 older children, one with autism and 2 younger children. I worked for 18 years as an health care assistant in a hospital ward with many pwd , I thought I knew stuff, how wrong was i. No one really gets it unless their in it, or have been in it. That's the benefit of TP, someone will have walked the path your on, and there is always a friendly response. I feel so much stronger, because i allow those feelings of guilt ,fear and sadness to have there place , and then I move on, my kids need me and they are my priority.

 

[Szaitisja]

I have a few close friends and some of them might understand a little. Most don't because they might not have experienced it. I do appreciate them understanding when i cancel plans at the last minute on occasions, usually because I am drained and not able to cope with social interaction. It is so nice to get away for few hours sometimes, but if I am not in the right state of mind dementia is the only thing I talk about and I get angry with myself for longing to have a break and not being able to stop talking about it over and over.

 

[Jezzer]

Hi all,

My mum is still relatively young to be suffering from Alzheimer's (just 67) but is very much in the severe stages and was admitted to a care home last year. We are in the process of reviewing her medication but she's not good - very upset and agitated most of the time. I couldn't love my mum any more, but to be honest visits are just horrible. The things I see and experience most times I go are just heart wrenching and I know that many of you forum members will sadly go through the same thing each time you visit a loved one.

What I would like to know is how do you deal with it?!

On a daily basis I can cope no problem - I visit, I have a quick cry in the car on the way home and life carries on. BUT. I just feel this distance creeping in between my friends and I. They are all very well meaning and ask how mum is and how things are going but I never really know what to say. I tell them if she's having a good phase or a bad phase, and all the practicalities like the joy(!) of trying to get CHC funding, but find I can't tell them the horrors that I really see and go through. They just wouldn't understand and there's nothing really to be said. I feel like I have a huge secret hanging over my head. And it's so relentless - it's not like I can have a sad story one week and after some positive words of encouragement report back that things are improving, they aren't and they won't, and given her young age it's likely to continue this way - or worse - for many years to come.

Does this make any sense?! Does anyone else know what I mean, and if so how do you deal with this?

Any shared experiences very much appreciated!

Hi @Marsupial15
Firstly apologies for my late reply. I am so sorry about your Mum having this awful illness at such a young age. My own mum is 90 and in the end stages but I still find it incredibly hard to deal with. Everything you say makes perfect sense and visits must be awfully distressing for you. Mum's friends have all passed away now and quite a few of my own friends have lost parents to Dementia. They rarely ask about mum, not because they don't care but they've been where I am and know how it feels. I also find it very difficult to talk about without getting upset. Your friends are young - around your age and, as @Sisu50 said, probably haven't experienced this. If I am ever asked how mum is I usually say "about the same". I do realise it may feel awkward for them to ask because they know things won't improve. As so many others have rightly said, folk have no idea, none whatsoever, what this illness is like unless they are affected as you are. TP is the one place you can come where you will find real understanding, support and love. People here genuinely care. I wish I could offer something practical to help you. All I can do is say lean on TP, use it whenever you need it, even if it's just to say how bad you feel. I send my love and warm thoughts to you and all those who have young parents with Dementia. Take care. Jan xx

 

[Kat.moo]

This is a really good post as you have described what many of us feel. The secret hanging over our heads. With my gran I feel that loads of people including family don’t understand how I feel being her main Carer. I have 4 children ask under 8 and also take care of my sister in law who has a mental health condition. gran lives a few doors down. Seeing her deteriorate daily and the heaviness I feel in my heart after the visits, very few of my friends and family understand. I haven’t visited in 2 days because it is all too much right now and I can’t deal with it. I love coming on here to make me feel not so lonely...

 

[Georgina63]

Hi @Marsupial15
Your post sounds very familiar to me and I concur with what others have posted in reply. When I come home from visiting my parents (both in CH) and my husband asks how it went, it can range from it was a good visit (which could mean both asleep, or having good days) to not so great (which could mean like yesterday Mum telling me ‘they’ are trying to kill her and telling me to go away). I realise when I’ve said it, how ridiculous it must sound, but to me it’s become the norm (if there is such a thing, though no less heart wrenching!) I have some very supportive friends, and I value them asking about how things are, but I do tend to generalise in my response, saying things are ok, relatively speaking. It’s interesting that I’ve been asked several times if my Mum and Dad still recognise who I am...maybe that’s what people fear most about knowing someone with dementia? But as we know, sadly that it simply one aspect! Anyway, sorry for rambling, just to say TP is a wonderful place to find people in similar situations who will have sound advice and offer great understanding. Georgina x

 

[Marsupial15]

Thank you SO much everyone for your responses, I am genuinely so touched and wish I could take the time to reply to each of you individually (I'm so sorry I can't!). Really, it means so so much to realise that this is normal and that so many of you have adopted the same coping mechanisms as me that sadly mean even our own friendships are affected by this awful illness. But also helps me realise how important it is to not let friendships slip because I'm feeling strange or burdened by this 'secret' (Which isn't really a secret but just something dreadful that can't be put in to words). Using TP more I think will be really helpful because as many of you have said, everyone here really understands.

I agree it's funny how as @Georgina63 says how lots of the questions focus on whether mum recognise me. The day she stopped recognising me was something I dreaded with utter fear for a very long time, but in truth I stopped recognising her long before she lost her grasp on who I am. I think you're right, it's just something tangible people can use as a benchmark (and I have to take a deep breath and try not to be irritated by it, I know they mean well!).

Thank you again and I'm sorry you are also experiencing similar - I wish you all the very best with your own situations.