Suddenly reality has hit me!

[Sunbell]

Went to visit my mum at the care home today and she was sat in her usual position in her chair with her legs on a pouffe, legs all bandaged up with falls etc. She was very vague and distant and didn,t recognise me (I have got used to this now after several months).

The senior nurse came and told me that they were putting mum a hospital bed in her room today as she can no longer walk and the staff have to use a hoist with her now. She is doubly incontinent and has to be fed now. O.k I thought, that is reasonable.

When the bed arrived and it was moved into mums room the staff took away the electronic mat which was always placed at the side of the bed in case she tried to get out of bed. The nurse said 'Oh she will not require this anymore'

I got such a sickly panic feeling and really started trembling, I just had this terrible feeling that they were making up my mums death bed and she would never sit with me in her chair again. I am thinking that tomorrow when I go she will be laid in the bed and won't be able to get up anymore. Am I being silly? I just feel terrible.

I know mum is very poorly with latter stage AD but suddenly reality seems to have hit me. She has suffered many years now but I have never felt so sick as I did today. Has it hit anyone else like this after so long.

I came home and broke my heart and my body feels to be shaking inside. I will have to pull myself together as I have my husband at home here, just out of hospital after another heart attack and I have to care for him.

When I retired I had so many plans for us, now just distant memories.

Sorry for rambling on but felt writing my feelings down might help a bit.

Thanks if you have had time to read this.

Sunbell xx

 

[jeany123]

Oh Sunbell i am so sorry that you have been upset, some things suddenly hit you don't they, I just wanted you to know that I read your post and am thinking of you and your husband and mum ,

Hugs from Jeany xx

 

[garnuft]

I read it Sunbell.
It's another awful stage for your Mum and you.

You have so much to worry about at home too, no wonder you are shaking inside.

The only comfort I can send is that eventually, as much as we are afraid, we adapt to and absorb new circumstance,
but we have to wait awhile for the heartache to heal and catch-up.

Be gentle with yourself, it is a sad, hard time you are going through,
a time I may have to face myself and I know how much my heart would ache.

Love and understanding. x

 

[turbo]

Hello sunbell, it sounds as if you have such a lot to cope with at the moment.
I hope your husband is making a good recovery.
Even when you know that dementia is a progressive illness it's so hard to see a downturn in your mum especially when the care home staff are matter of fact about it. So, no of course you aren't being silly, just a daughter who loves her mum.

turbo

 

[stanleypj]

So sorry to hear your news Sunbell. I'm sure many of us are able to to relate to those moments when we realise that we have reached a significant milestone on the journey. This is probably where you are. I think it's perfectly understandable that you should feel shock when you realise this.

Realistically, if your mum is completely unable to walk then there may be no further risk of her trying to get out of bed, but it would probably be a good idea to talk to staff about this. I presume the new bed will be higher. Maybe there us a safety rail?

But I think you are really saying that, in the light of all the pressures you are under, you are finding this very hard to deal with. I hope posting has been helpful and that others will be along to reassure you that this is the best solution, give your mum's current position.

Caring for one person is hard enough. No wonder you are struggling in your situation.

Don't give up your retirement dreams completely. Things change, sometimes in unexpected ways.

Good luck - you deserve it.

 

[CeliaW]

Sunbell - I am so sorry to read your post. Would it be an idea to ring and talk to whoever is the most senior member of staff on tonight and say how you feel - and also ask if they plan to still get your Mum out into her chair for parts of the day.

After all, as long as she is not in extra pain by being moved or it is uncomfortable for her to be in the chair - it would be good for her and especially for her pressure area care and her chest to be in different positions and certainly more upright in terms of the chest being kept as clear as possible.

You may find that they thought to warn you about the hospital bed, which is good, but didn't think to say what the changed plans could involve.

You may not get a complete answer tonight but they would at least know your concerns and be prepared to address them with you tomorrow.

Take care

Celia
x

 

[Sunbell]

Thanks to all of you who have replied. It is comforting to know that so many people care and it is nice to speak to people outside these four walls who completely understand.

I have phoned the senior nurse this evening and told her my concerns, she was very kind and I have arranged to speak to her tomorrow.

I am trying to calm myself down a bit because I don't want my husband to see all my anxieties because he will just worry and under the present circumstances that could prove disasterous.

I think a nice cup of coffee and a biscuit might help Bless you all.

Sunbell xx

 

[60's child]

Sunbell
I have no advice for you but wanted you to know that I sympathise with how you are feeling. I care for my Mum and every deterioration knocks me for six. I usually feel silly as that is the way it is with dementia and I know this, but it is so hard to accept what is in front of you isnt it?
Take care.

 

[catbells]

Hello Sunbell
I was sad to read your post and feel I`m not too far behind you with my Mum.
I too have another relative who I support through illness, my son. At times it has been too much to cope with both situations so I walk the path with you. I too have just retired. but continue to waslk the path with Mum. I have not made any committments this year, I don`t feel free yet, but have been able to take holidays away with my hubby, who has had to take a backward stand whilst I cared for Mum/
I feel it will not be too long before the hoist is used and possibly a hospital bed. I cry inside when I see them walking her to the bathroom/bedroom using a support belt. She talks to us but her words are lost, we don`t understand. She is in a very good dementia unit. I see Mum everyday unless on holiday. The staff are angels, caring from the heart and I have seen them very upset when a resident dies. I work closely with them regarding Mum`s care. Nature is a funny thing, just when you think "I can`t cope with the situation(s) Son and Mum, my helath being afected, suddenly everything becomes better. They say you are not given more physical or emotional pain than you can cope with.At times I question this. I would say it has taken me a good 3 years to change my "mind set". It was awful when she didn`t know who I was. I felt I was no longer "special" to her, but I witnessed her with carers and other residents and she treated them the same as me, with love, tenderness, lots of kisses and giggles, and this helped me a lot. Although I still have the final stages and loss of her physical to face, I am much calmer and relaxed. Not so traumatised/distressed. But every time the phone rings - is this "the phone call" still lies with me.
The experiences we have in life make us stronger and able to face other challenges. No experience is wasted.
Don`t beat yourself up. Talk to your husband and carers. The carers are there to support relatives too. Cry when you feel you need to,let it go, perhaps take yourself anyway into another room, but let the grief out. It worked for me and my husband and family understood. Treat yourself to something nice each day, it doesn`t have to be much an ice cream/glass of wine/retail shopping. We are out of control with the progress of the illnesses, so I learned to live for the moment, the NOW, not worrying about decisions I made in the past, nor thinking about the future, its a waste of time, so I now find I spend more quality time with Mum, living the moment, the NOW. If I think any further than a day, I would crash again.
thoughts are with you my friend
Look after yourself
Catbells xx

 

[Sunbell]

Hello catbells

Thank you catbells for your thoughtful message.

We seem to be in very similar situations just now. You have given me some very positive thoughts.

I send good wishes to you and your lovely mum too. Take care my friend.

Sunbell xx

 

[bridges]

So sorry your feeling this way, but reality does hit you like a ton of bricks, I don't think you notice the way they , they go down hill untill it's something major like what has happened to you. I lost mum 7 weeks ago, and used to see her almost everyday, and some days I'd think she was quite normal, she was ill for nearly 4 years, but looking back I can see the massive diffrence from begining to end. Begining I could walk her around a supermarket, at the end she had to be hoisted, and could hardly walk. I'm still not over it yet, still get panic attacks, when I think of the things we used to do, and will never happen again. Make the most of your time together, enjoy her company. It's a very cruel and hard disease to understand.

 

[Sunbell]

Hello bridges,

So sorry to hear about your dear mum, hope you soon feel a bit better in yourself, it is so soon after your mum passed, it takes a long time to get over the loss.

I lost my dad 25 years ago and till this day I can still shed a tear and miss him very much although I realised many years ago that life must go on.

Thank you for your thoughtful comments, I try to make the best of my time with mum as I know inside me that the end is getting nearer but how long, nobody knows.

Take care, Sunbell xx

 

[tweetypie]

You've got so much to cope with all at once, poor you

All I would say is feel free to voice your concerns to the care home, if you want the mat there for your mum - just ask if she can have it to see if it's still needed and say it's for your peace of mind too, they'll understand - well they should do

I do hope all goes well for you, take some time for yourself, you're important too

 

[grobertson62]

Hi sunbell
I know just how you are feeling
We went away for 10 days and came back to dad having gone from being able to trsnsfer with help to needing a hoist
From being able to eat normal food and drink to needing to be fed and on mush too
It is another shock. Another step to get used to
The profile bed was the best thing ever for dad. So much more comfy and the home got him an air mattress. Which helps to prevent bed sores.air is pumped thro and changes and relieves pressure for those using them
I do hope hubby is doing well.
Take care of yourself too
Gill