new to all this

[Skye]

I don't subscribe to this idea of leaving them for a week. I visited every day, right from the start, and I think it helped John accept being there, that I was part of the place, even though I wasn't there all the time.

Other people will probably disagree though, so read all the answers and do what seems right to you. I just know that if/when I am placed in a NH, I'd be terribly upset if no-one came to see me for a week!

The same applies to children. Visit a few times on your own, then you'll have a better idea of whether they'd find it too distressing.

I think it would help your mum to maintain contact, but you must put the children first.

 

[Brucie]

I don't subscribe to this idea of leaving them for a week.

Based on our situation, I agree entirely.

When Jan went to her home, I was there two visits a day, later reducing for 3-4 years to daily visits.

Now, after 8 years, because of wear and tear on me, as much as anything, I have reduced to 3 visits a week, sometimes 4.

Whether all of this was for me, or for Jan, or - more likely, because everything else ever was - for US, I neither know nor care. It is simply how it must be.

Each case needs to be judged on its own merits and practicalities. It is important to realise there is no right and no wrong, just what works for a given situation.

 

[roundy]

Thankyou once again for you help and advice.

My heart certainly tells me to be there as much as is humanly possible.My children are a part of my mums life and they will miss her as much as she would them,so I will take your advice,Hazel, go a few times and when I know my mum is settled I will take them.
Bruce,I think you are spot on, it is as much for my own sanity to see her as much as I can and not just for her. Don't know what else I will do with my day,although work will be glad to see me back..took a lifestyle break for the past couple of months.
Thankyou so much,today I actually think am going to get through this!
Lisa.xx

 

[katherine]

Hi again

my two kids have been very involved in all of this with my mum. they are undaunted by it all. It's just their Granny Annie. I would keep yours involved. You will all get used to the new situation in time. And children are brilliant at adjusting and coping and just taking things in their stride...

Loads of love

kate x

 

[roundy]

Thanks Kate.
Thats if she ever gets in the home,funding was refused yesterday. I have lots of plans to get the fund,with lots of advice from this site,I don't even want her in one but will fight for the most appropriate for her! It is a roller coaster,my emotions are all over the place at the mo. But if I keep my mums best interest right at the heart of every decision, I shouldn't go far wrong.
You are so right about children adapting,my boys have told their friends that their grandma is "a bit crazy but nice", from an 8 and a 6 year old thats not too bad!
Love Lisa.xx

 

[rhallacroz]

HI Lisa
Hope your feeling stronger today. You will get there I know how hard it is. I just couldn;t put my dad in a home when all this started it was just so difficult. I also have 2 young children who where 7 and 10 when my dad started to develop dementia. Through it all my chidren have been involved and what a wonderful education it has been. They used to refer to grandad as the grandad with the wobbly brain. The journey has been long and difficult at times and I can tell you without their support and help I think we would have all cracked as a family. Now nothing phases them in fact they could teach others all about dementia and the way things are.
They are now 9 and 12 and when I ask them if things should have been shielded from them and Grandad excluded they are horrified. My friends say they can;t believe how they are and say that there children just wouldnt be able to cope with the things they have had to do.. BUt they wish that they had the insight that my 2 have. Life is a journey and some of us have different routes and better maps but at the end of the day. We cannot and should not exclude our chidren from this journey in fact it is probably one of lifes great experiences in a funny way,
Please PM me if you need support locally as I think we are probably near geographically.
Thinking of you
Angela

 

[roundy]

Thankyou angela,the boys have certainly seen a lot over this past year,my mum
went to the loo in our house and came out with no bottoms on,my oldest boy just came into the kitchen and very matter of fact said,mummy grandma needs your help with her pants,couldn't get them up" god knows what he thought.As soon as they go into my mums flat they both say hi grandma-and then both of them automatically tell her who they are and what their names are and she always says she knows but I can tell she is glad of the quick reminder.
My oldest boy feels it more and I worry how it might affect him but we can only do our best and I do try to check-in with them every so often about how they're feeling about grandma.
Angela, not really sure what PM is, sorry to be so thick,but fairly new to all this.
Love Lisa.

 

[JeanD]

Hi Lisa, I know a lot of people won't agree about this, but I wish we had found my dad a good nursing home sooner than we did. We hung on as long as we possibly could to keep him at home.

Now I think that he would have settled better if we had moved him sooner. He would maybe have made some new friends, and the staff would have known him better as a person, rather than just a patient.

Please don't think that you are letting your mum down. There are a lot of good homes, and many people thrive in them. If you find you are badly disappointed, you can move her.

Your boys seem well able to cope too. Perhaps when they first visit you should make sure they bring some toys or books to keep them busy.

I hope when you get your mum settled you will be able to spend more quality time with her, with other people taking the burden of looking after her.

love Jean

 

[roundy]

thankyou jean

thanyou jean
It was good to hear your views. My sisters are screaming at me to get mum in a home,but dont care where she is or what she is doing!They dont see her very often but still cant cope!!!
It was good to hear a positive view on care homes but its still breaking my heart. Thats if she ever gets in one,little do my sisters know,my mum has been refused funding for the home i have chose. oh,cud do with gods help now,but will keep fighting!

 

[roundy]

thankyou jean

thankyou jean
It was good to hear your views. My sisters are screaming at me to get mum in a home,but dont care where she is or what she is doing!They dont see her very often but still cant cope!!!
It was good to hear a positive view on care homes but its still breaking my heart. Thats if she ever gets in one,little do my sisters know,my mum has been refused funding for the home i have chose. oh,cud do with gods help now,but will keep fighting!

 

[rhallacroz]

Hi Lisa
Its Angela here PM means private message if you click on my name you will be able to send a private message to me. Its just that I think we live in the same Town and I might be able to share tips with you. I also have travelled the same similar road. Give it a try. I will check my private message box tomorrow.
Good Night
Angela

 

[roundy]

New day,different problem! Went into mum today and she was in tears,said she was shaking and she was. These mood changes are so hard to watch, is there anything she could take to calm her down? Because it is getting harder and harder for me to calm her down,usually I just take her mind of it but today she was sobbing like a baby just had to cuddle her till she finally stopped,its awful,I hate this illness!!
Lisa.

 

[cgf]

My Mother is just 61 and entered a care home last Friday.
I have been looking for a suitable place for the last year and have travelled far and wide to locate one. We finally decided on the home we have found now and Mum has gone in on the premise that her medication is being looked into following a series of falls and seizures and that it is a place where people can go for some 'R&R' and be really pampered and looked after.

The first few days I was a wreck and made frantic phone calls to various agencies to discuss the prospect of having her back home and securing 24 hour care and actually had thoughts of going and picking her up and taking her home. The reality of seeing my mum in the home was heart breaking and seemed to be the begining of the end to me. I had to go back to mums to collect some of her things and it felt as though she had died, her boots were still by the back door and her magazine on the side table but the place was empty and it was as though time had stood still since we left there last Friday for the care home and I cried and could not bring myself to leave for ages.

I thought long and hard about 24 hour care at home but as my Mother lives alone I felt she may become very isolated at least in the care home she has the freedom to wander around, engage in activities and form relationships with a variety of people, which I feared she may not be able to do at home quite as easily with only the companionship of a small group of carers.

It's been a week on now and already she has become visibly relaxed and seems comfortable and has commented that she feels able to do more without the worry of running into trouble if she were at home on her own in between carers calling and is actually finding herself a niche in helping out some of the more elderly residents when they encounter difficulties! The home mum is staying in is small and we have been lucky that there are a few others there who are young sufferers, so our search was not in vain but a very hard one with all manner of emotions encountered on the way.

Residential care will not be for everyone and I never thought that at this juncture my Mum would be in one right now but everything told me it was the right time and I have to hold onto the reasons why I thought it was the right time and believe that she is safe and well cared for and just take each day as it comes. I take on board the comment made about the feelings of guilt that comes from feeling as though our parents looked after us all through our childhood and were always there for us and that we should in some way repay them and not desert them in their hour of need but we were children and were growing more able bodied day by day and eventually able to take off on our own to live our own lives and as parents that's what we do, we enable our children to be come independant by successfully raising them and preparing them for the world and wouldn't have it any other way. I know if I had broached the subject with my mum before this disease took hold and asked if she would have wanted me to care for her full time and to tend to some very personal aspects of care that are involved, she would have said no and would have felt guilty for being a burden and probably would have found the role reversal very difficult.

I wish you the best in whatever decision you reach for your mum but I must say that at the end of the day it is those left behind that actually find things harder to deal with and to come to terms with. I am still a wreck but take comfort from the fact that my mum seems ok, is content and that we still laugh and love and for the time being can be as we've always been albeit in different surroundings.

 

[katherine]

Hello again Lisa...

You should see your mum's consultant or GP about her mood swings. I'm sure there must be something to calm her. Is she on a lot of medication? My mum's been on all sorts but never too much at the same time. I've always felt that for her to be content is the most important thing. Although I have to say that hasn't always been possible.

Also did you say your mum is refusing the funding? The Social Services shouldn't really be letting her make decisions as she clearly would be unable to make a sensible decision. That should be up to you. Fight like mad for what you want and in the end you will get it if it's the right thing... When I was having problems getting what we needed from the Social Services the social worker ended up giving me the number of her boss who was actually on the panel making the decisions. She knew that he had no first hand experience of our family and situation and so wasn't really seeing the urgency. I called him and wailed and cried and explained it all and we had what we wanted in a week...He just needed to feel and see the human side of it all... not just hear it second hand from the social worker..

Also i loved what someone said about even this situation being a valuable part of your children's life adventure. I totally agree. They will be fine and their life the richer for all of this. It's weird but when my mum first got ill I thought it was the end of my life in so many ways. My life has changed vastly and although the last six or seven years have been heartbreaking at times, this experience has brought a huge amount to my life. I've met some amazing people like my mum's carers and have renewed faith in our society seeing how well my mum is provided for with all the benefits and the funding for her care. it was a struggle getting there but i don't think she'd receive the same care anywhere else in the world. Also I know i and my family have done the right thing for mum and have stepped up to the mark and that helps me to feel OK. And also, most importantly, although this illness is pretty dreadful at times, my mum seems to be OK. She's getting more ill of course but she smiles a lot and is comfortable and I think she's OK. If I could change things and have her back as she was of course I would but that's not life and I think we've made the best of this.

Anyway, sorry for the waffle... but it all will get easier. I think you're in the eye of the storm right now. I was for a few years but things are calmer now. They will be for you too one day. Just keep strong. Hope you get what you need and your mum calms a bit.

Lots of love

Kate x

 

[rhallacroz]

Mood Swings

Hi Lisa
How are you today. Sounds like your mum has had a bad day. I am only going to share my experience and this not medical advice. But my dad suffers real highs and lows and cries and cries. This is so distressing however over the last few years we have dealt with it by plenty of reassurance and often little white lies. By saying things like I know what your worrying about and I have sorted it my children will often use my mobile to ring mum and dads phone and I answer and say things like oh yes of course there is nothing to worry about etc. I try to find out what dad is worrying about although this is difficult as with his Vascular dementia he can;t speak very well. Dad goes to a day centre and the consultant there has sometimes prescibed mild sedatives etc I have tried them and to be honest made him into a zombie. So I stopped them asap. I think in my dads case the less medication he has the better. BUt one can only try I supose. Lisa did you learn how to Private message yet. I would like to tell you about a home not far from you which is run by a local council that could help. But I dont feel comfortable mentioning it on air so to speak so please PM me if you can.
If you look at the box in the top right hand corner your name will appear and beneath it there will be a sign for Private messages look in the box and you will probably find lots of messages from other people and myself.
Good luck
Angela

 

[roundy]

cgf-thankyou so much for your post,its good to hear your mum has settled in ok. My mum is 61 on Wednesday,see just typing that make me cry,it just not fair. I know am going to be awful when she finally goes in,if we ever get the funding in place,ss have refused to fund her going into the home I wanted because its very expensive but its the only place with a young dementia unit, instead they want her to sit there with a load of 90year olds but I will fight all the way for her.
How did your mum do when she first got there and how did you get away,just can't see me walking away from her. Was your mum scared,did she look lost,what were the staff like, were they good to her,is your mum asking when she is coming home or anything??? Sorry,so many questions,just have them all in my head.
Got lots more but don't want to scare you too much!
Thankyou again,read some advice you have given to others, you are spot on!
Love lisa.xx

 

[roundy]

Hi Kate
Got mum in at the doctors on Friday,I have a list of questions as long as my arm so will add this to it.Just want her not to be trapped in this scary world she seems to in,wish I could take all of it away.
SS have refused to fund the care home I chose for mum,they see the need but have no "money in the pot" for it, I wouldn't mind but it is SS who have said she is not safe at home and needs to go into a home! I would go to the end of the earth to keep mum at home as I know how sad she is going to be when she goes into it.
Your right about the children,this illness has changed all our lives and has changed me,so much.Didn't think I would ever be able to fight like I have for my mum,mostly to do with her finances and mums care agency.At times I have surprised myself! But you know, I would do it all over again in a heartbeat and I will carry on fighting for her till the day she doesnt need me too.
I know am in the midst of the worst bit and look forward to it all being more settled for mum aswell.
Thankyou,don't know how I managed before I found tp.
Love Lisa.xx

 

[roundy]

Mums birthday today!! She is 61! Just going to pick her up..then we are going to get our hair done,got a lovely hairdresser who comes to the house and is really gentle with mum..then we are all going out for dinner,she wants to go for steak!! This is the first thing she has asked for in ages,so pleased,so steak it is! Hope she remembers!!
\its all bitter-sweet.
Love Lisa.xx

 

[Grannie G]

Dear Lisa

I hope you have a good day with your mum. Wish her Happy Birthday.
Love xx

 

[roundy]

Had a wonderful day yesterday,mum was just great. Hair was done,new clothes on and off too the restaurant,explained to the waitress before we sat down about mum and she was fantastic,really chatted with mum,didnt ignore her or look at her funny. Mum was just beaming,my boys sat either side of her and everytime she asked what anything was they would just tell her,was so proud of them.
Then today,went to see her as usual and she is fine,remembers most of it yesterday,it makes putting her in a home so much harder.They phoned me today to see when mum was coming in,it was on the tip of my tongue to say never but I said I would get back to them later...When should she go in..I have no idea!!
A gift I bought for mum was a cushion,on it is " A MOTHER HOLDS A CHILDS HAND FOR A MOMENT BUT THEIR HEARTS FOREVER"
So right.
Love Lisa