new to all this

[roundy]

hi
am new to this so be prepared or me to pour my heart out,sorry in advance!!
My mum was diagnosed back in May at the age of 60.She did own 2 hotels but lost them due to not paying a bill in years. So as well as this horrible illness, I am having to sort out all her debt.
Its so sad to see someone you love go from life'n'soul to someone who is scared to be left alone for anytime.
She is in a rented flat on benefits after working so hard all her life,its hard to take and at times I get so upset.
She goes out trying to look for her hotels,we have an careline alarm on the door so I can get to her as quick as I can(thankgod for an understanding hubby,he has my 2 little boys more than ever now!)There has been times I havent got there in time and she has fallen and I end up feeling so guilty,last time she split her head. On the back of this my sisters(who hardly see her)and social services have insisted she goes in a home. How do I put my lovely mum in one of those places?? I have found a young dementia unit in St Helens which she is going into in the next few weeks. I have put it off for weeks,covering up her behaviour,not telling anyone when am there four times during the night...Telling everyone she is not too bad,I even believe myself at times! Well,I dont know how am going to walk her into that place but I will have to.
On the postive side we have a fantastic CPN who I owe so much to.Also I have had some really special times with my mum and I feel privileged to have took care of her and although I am exhausted I would do it all over again in a heartbeat!
Told you I would pour my heart out,sorry if I have bored you!
Lisa.x

 

[connie]

Dear Lisa. Welcome to TP.

You could never bore us. It is good sometimes just to share thoughts and emotions. Everybodies journey is different, the caring aspect altered somewhat when one is caring for a parent, sibling, or spouse.

It sounds as if your dear mum will be safer 24/7 in a good care home, and I am glad that you have found a home catering for early onset patients.

Please continue to share your story with us, it does help.

 

[Helen33]

Hello Lisa

I've just read your post and would like to say welcome to Talking Point. It sounds like you needed somewhere to pour out your heart and TP is always here providing a safe place for all of us to pour our hearts out. Your mum going into a home is a major change in both your lives and from what I've read from other people on Talking Point, it can be a traumatic time. If you feel you need support then it might help to read how other people have/are coping in similar situations.

I, for one, would like to send best wishes.

 

[Skye]

Dear Lisa

I'd like to add my welcome to TP. I hope you'll find it supportive.

It's very hard, allowing someone we love to go into a home, allowing someone else to take ove the day-to-day care, but there comes a time for most of us when it becomes inevitable.

My husband John has been in a home for over a year now, and though thee staff are excellent, couldn't be kinder to both of us, it still breaks my heart.

In our case, it was because John lost mobility and balance, so I couldn't manage him physically. In your case it's because your mum needs to be kept safe.

Whatever the reason, we should none of us feel guilty. We have done all we could, but there is always a limit to what we can do.

This is going to be hard for you, and though it gets easier, the pain never really goes away. But you have done so much, and with a young family you have made the right decision.

Hang on to that, and post whenever you need support and reassurance.

Love,

 

[roundy]

Great day..But the Care home looms!

thankyou for your kind words. What a great site this is,last night I was on it till early hours,didnt realise there were so many people in the same situation as I am.

We have had a wonderful day,my mum came for dinner and she was fantastic,smiling,joining in conversations,laughing at my young boys, today has been one of the best days with my mum in a very long time. Wish it could be like this all the time but I know by tomorrow she will be having a nightmare, trying to find her hotels and being terrified when I stand up to leave. But today,it was great.

I have already read some of todays posts and I know people have had a bad day,my heart goes out to you. Don't forget, I have still got to put my mum in one of those places...care home! My stomach turns every time I think about it. Any advice on taking my mum into this home would be much appreciated.
Lisa.x

 

[Helen33]

Dear Lisa

It is wonderful to read that you have had one of those special times with your mum today. I treasure these moments and I hope that you have many more times like today.

I'm sorry that I have nothing to contribute with regard to care homes because my husband is still at home with me.

Love and best wishes

 

[connie]

Any advice on taking my mum into this home would be much appreciated.

Dear Lisa, once again this is an area where everyone is different.
Has mum ever been into respite? Sometimes this is a 'gentle' way in.

Lots of excuses have been used i.eroof is leaking, so you are staying here whilst it is being fixed.
Or I/you need a break whilst medications are sorted out.

On thing I would say is:- whilst it is good to be prepared about the journey ahead, don't forget to take time out to enjoy today.
None of us really knows just what lies ahead.

So glad that TP is being of use and comfort to you.

 

[roundy]

hi connie
Yes,mum did go into respite! It was 2 days before I was due to go on holiday in August and I had set everything up but knew my heart was breaking. Anyway I did take her in on the pretence that she had to sort medication out and it was a private hospital.
That was the worst day of my life,she looked so out of place,being so young and she was so sad,not angry. I sobbed and sobbed,never slept,ending up going to my mums flat early in the morning..here I made up my mind that I couldn't go on holiday and leave her there so I went and got her out,/I now call it my escape from Alcatraz!! I took her home and upped her care package,called on every friend I have to go and see her and a special friend did the nights for me. I called every few hours and she was fine. I was so glad I got her out of that place.

This timeI have picked a young dementia unit,although funding has not been approved yet,it is very expensive. I have been to this place a few times and I feel happier but I just can't see me walking away from her. Should I have done more to appeal social services decision but that would mean fighting my sisters too and although i have power of attorney it would still be difficult. How do I take the person who cared for me for so long,clearing up my sick,putting plasters on my cuts into somewhere like this with strangers,just give up on her. She never gave up on me when I kept her up all night needing feeding etc. Gosh,I have gone on a bit there! But thats how I feel, just struggling with this home business!
Lisa.x

 

[connie]

Oh Lisa love, you are not giving up on your dear mum, far from it.

This timeI have picked a young dementia unit,although funding has not been approved yet,it is very expensive. I have been to this place a few times and I feel happier but I just can't see me walking away from her. Should I have done more to appeal social services decision but that would mean fighting my sisters too and although i have power of attorney it would still be difficult. How do I take the person who cared for me for so long,clearing up my sick,putting plasters on my cuts into somewhere like this with strangers,just give up on her. She never gave up on me when I kept her up all night needing feeding etc. Gosh,I have gone on a bit there! But thats how I feel, just struggling with this home business!

Nothing and nowhwere will ever be 100% right for mum, but that goes for all of us who face, or have faced, the prospect of care home acommodation. We need to try to take ourselves out of the equation, and work through what is right for those we love. Where they will be safest and best cared for as they progress through their ilness.

I certainly do not have the answers for you, but can empathise with your feelings. Lionel saved my sanity aftr my husband died, and yet I could not save him from going ino a home. I never feel though that I have given up on him, and I hope that deep down he knows it.

Wishing you strength to make the right decisions, love n'hugs

 

[roundy]

how do i put her in a care home

connie,can I ask you if lionel went downhill faster once he was in a home?I hear people do and I dont want that for my mum. When I see the way she was today,so happy and content to be surrounded by my boys, she wont have that in one of those places.
Also, do I let my boys go to visit her? I just don't know. My oldest boy, who is eight, said he wants to and says its mean to put grandma in hospital. He has already got into a fight in school over mum,when he told friends about her and a week later they teased my mum and he lost his temper and ended up in front of the head!

Lisa.x

 

[connie]

Lionel's downhill trend would have happened even if he had been at home. It was due to Tias and seizures.
(My DIL's mother is in the same home as Lionel, she has not gone downhill at all in the 21 months she has been there)

My youngest grandaughters visited Lionel until I felt that neither they nor he gained anything from the visit. My three grandsons still visit about once a month.

Lionel is in a home 25 miles away, so visiting for the family is not always easy. For me, well he is my life, and I like to spend as much time with him as possible.

Do as your heart dictates Lisa, you will not go far wrong.

 

[roundy]

Well,I knew it wouldn't last.. just been to my mum after a neighbour called,said she was bashing on doors down the road looking for hotels. She was so confused, got her home and gave her a bubble bath which always calms her down.
She cant remember anything of the lovely day we had yesterday,that bit of the illness hurts me more than anything else. Left her to get back to my children,always feel guilty,she would not come back with me and to be honest I think yesterday knocked her routine which hasn't helped. Have phoned her and she seems fine but that can change in a second!!
Its so good to be able to write all this down when I get back,feels great to unload.
Lisa.x

 

[jillywak]

Fate I read your message

hi

am new to this so be prepared or me to pour my heart out,sorry in advance!!
My mum was diagnosed back in May at the age of 60.She did own 2 hotels but lost them due to not paying a bill in years. So as well as this horrible illness, I am having to sort out all her debt.
Its so sad to see someone you love go from life'n'soul to someone who is scared to be left alone for anytime.
She is in a rented flat on benefits after working so hard all her life,its hard to take and at times I get so upset.
She goes out trying to look for her hotels,we have an careline alarm on the door so I can get to her as quick as I can(thankgod for an understanding hubby,he has my 2 little boys more than ever now!)There has been times I havent got there in time and she has fallen and I end up feeling so guilty,last time she split her head. On the back of this my sisters(who hardly see her)and social services have insisted she goes in a home. How do I put my lovely mum in one of those places?? I have found a young dementia unit in St Helens which she is going into in the next few weeks. I have put it off for weeks,covering up her behaviour,not telling anyone when am there four times during the night...Telling everyone she is not too bad,I even believe myself at times! Well,I dont know how am going to walk her into that place but I will have to.
On the postive side we have a fantastic CPN who I owe so much to.Also I have had some really special times with my mum and I feel privileged to have took care of her and although I am exhausted I would do it all over again in a heartbeat!
Told you I would pour my heart out,sorry if I have bored you!
Lisa.x

Hi Lisa

I am so sorry to hear your news and feel axactly as you do, our stories are so similar and i am too suffering from a broken heart at the fact that my mum (57) is recently diagnosed and due to a recent mystery accident is now facing the daunting prospect of permanent care. Mum has been in a temporary home for 6 weeks and next week i have to face the facts that she may never come home. I truly feel your pain at seeing you much loved mum full of life in such a way that she cant make a decision or understnad how she has been hurt. I too have 2 young kids and what i thought was a future, but am finding it so hard letting go and dealing with all the feelings of having mum in a care home. for what its worth and i know its hurts so much ( trust me i have been today) your mum will be so much safer in ahome and will have constant care and company, and we have to face the facts that is what she will need if not now but in the futre. For me mum has progressed fast.It was only last summer she was on holiday with me and my family being very forgetful butrelativley normal( yes i make exuses too and believe them). A mum a grandma etc Now she is just a shadow of whom i love and miss so desperatly Dont feel alone and feel free to pour your heart out..trust me if i dont i think i will spontaneously combust preety soon. Keep in touch and hang on to all the good times.. xx My heart goes out to you. Jill x

 

[roundy]

thankyou!

Hi Jill
I only found this site the other day and am hooked..on it every spare moment,though I dont have many of those! My 2 boys got little notebooks/laptops for xmas and I keep pinching one to have a look at the site.
I cant believe someone else is going through the same as me,you always think your on your own. How much have you cried since your mum was diagnosed? I know I have cried enough to fill the red sea! My hubby comes home and I hear him ask the boys "hows mummy been today?" I do try to be brave and I am a lot stronger now than I was. I think I have come to terms with the illness but I just can't face putting her into one of those places. Every logical bone in my body says its right for her,am not a stupid person, I can see the risks are very real and dangerous but that doest stop my heart from aching every time she smiles when I walk into her flat or she laughs at one of my silly jokes. I start to think, see! she is not that bad but then it hit's the fan again. Funny thing is,am not a wet, soppy person but this has knocked me for seven and I find myself telling her I love her all the time.
All my friends think am doing great and being really strong,running all over the place but they don't see me exhausted at the end of the night,not having the energy to read my boys a bedtime story! Only to be woke up 2 hours later by careline...but you know what,Jill, i would do it forever if it would mean she could stay at home!
Has your mum already been in a home? Is she going into an old peoples place or have you managed to find her a young dementia place? Either way its just not fair.
Thankyou so much for getting in touch and please let me know how your mum is.
Love Lisa.xx

 

[katherine]

Hi Lisa

My mum was diagnosed with Alzheimers over 5 years ago now. I can hardly believe it's been that long. I have two toddlers and have moved from London to be near her. We managed to keep her at home using money from the Independent Living Fund and Direct Payments from the social services to employ carers round the clock. This situation has worked out well for us but it's not the right solution for everybody. But it may be an option for you if the home doesn't work out. But if you give it time, the home may be the perfect place for your mum. Perhaps she will come to think of it as a hotel and the environment may feel familiar to her?

It's so hard all of this. I feel exhausted to tell you the truth. As i said i opted to keep mum in her own home but it's a constant challenge. My mum needs help with everything now. She has a hospital bed and stairlift, we've made a small downstairs bathroom in her tiny house and the next on the list is a hoist. I never wanted to see that day but it looks like it's looming. Although for my mum the emotional suffering seems to have passed more or less - there is now a long list of physical things we need to attend to - and with mum being at home - my involvement in all of this is huge.

However, I think for me it's been worth it but it isn't right for everyone. A real caring care home I imagine can be a lovely place.

I hope it all settles down and over time you can feel less sad

lots of love

Kate x

 

[roundy]

hello and thankyou for your reply.

I would love to keep mum at home,I was so upset when they said I had to start looking for a home and if I disagreed they could go to court and make mum go in one,I felt so let down as I thought I was just begining to cope. I was about to go on to direct payments and was feeling really positive and then a doctor and CPN who wasn't my mums came to my mums and that was it. I felt like I had been kicked in the stomach.
The worst part of it was my mums lovely CPN,Helen,was on holiday and didn't have a clue nor did my mums social worker...but they had to agree it was the best thing for my mum because she was wandering and she smokes. I didn't and still don't agree,mum is going to be so sad. Although she wanders and can't remember much,physically she is not too bad and she is very aware of whats going on so don't know how am going to get her in the home ,the only thing is she trusts me 110%, I hope she still does after I throw her in this place and not hate me!!
Love to your mum.
Lisa.x

 

[katherine]

Hi again
You're so not throwing her in anywhere. It sounds like it is out of your hands and if your lovely CPN agrees then it must be for the best as you trust her don't you?
A home is not always the worst thing at all. You never know. Your mum might actually like it when she settles in and it will definitely bring you piece of mind in the long run.
It must be so hard but she will never stop loving you.
Be strong and it'll be OK
Loads of love
x

 

[roundy]

Thankyou!
Feel a lot better today, the boys back at school so was able to spend a long time with my mum,gave her a bath, took her xmas tree down and cleaned her little flat,we had a lovely lunch but she didnt eat much,I suppose I felt like I was back in control for her today,she looked good,the flat was clean and I didnt have to rush off for my boys.
You are right in every word you say,I do trust Helen,so it must be right. I know it is,the risks for my mum at the moment are very real, she deserves to be safe, I just have my irrational moments where I can't see the wood for the trees.
Still don't know how to take her in. Do I take her stuff in first and set up her room or do I just do it all in one go? If anyone has any advice it would be much appreciated.
Thankyou again Katie, I do hope your mums ok.You sound like you have everything in perspective and so strong. Your mum is so lucky to have you.
Love Lisa.xx

 

[Skye]

Lisa, I'd definitely advocate getting the room ready in advance -- ask the manager when you can have access.

Take in a few of your mum's personal things, and lots of photos, and make the room as much like home as possible.

The manager made a handyman available to me to carry things in, and put up pictures.

John transferred directly from hospital, and I was in the room to welcome him when he arrived. Then they brought in a tray of tea and cakes, and various members of staff popped in to welcome him -- much like TP, really!

It's better not to just get up and say goodbye. Ask a member of staff to come and take her to the dining room, or something, then disappear while she is diverted.

Good luck!

 

[roundy]

thankyou,sounds like a plan,I have took lots of photos over christmas,will go out in the morning and buy some frames.
Did you go to visit the next day as they have suggested to me that I stay away for the first week or so,I think they saw me shaking when I was looking around,which isn't like me at all.
Also,what do you think about letting children visit,I have an eight and a six year old and I just don't know if to let them or not. My eight year old wants to but I don't know,they can be quite daunting places.
Thankyou again for all your advice.
Love Lisa.xx