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[JulianneGreen]

Hello everyone,

I'm Julianne, and I'm a 24 year old mother of 4 young children. I'm an only child and sadly my father died in March 2000, and scince then i have seen my mothers health deteriorate. 2 years ago she was diagnosed with moderate alzimers, with carers assigned to pop in on her in the morning, meals on wheels, shopping ect as she lives on her own.

I coped quite well with it all at first, but now the realisation is setting in that things are getting worse. And I'm scarred, grieving, and at a loss what to do for the best.

Sorry to introduce myself on a negative note, this is a bad day! In this past week she has lost interest in food, cant be bothered to go upstairs to use the toilet, cannot operate her t.v, and just sits there doing nothing fealing low all day. I cannot persuade her to go to day care, and she is devistated over the care she recieves now, let alone incresing it!

She wont let anyone assist her in bathing, although she has arthritis and cannot manage well alone. When i do manage to persuade her into the bath, she doesnt know how to wash and comes out with out using any soap or washing her hair. She wont change her clothes because she thinks she looks horrable in them. so they are dirty and smelly. I buy her new things but she refuses to wear them.

She begs me to let her cope alone, but yet when left alone she becomes depressed and low and then needs me.

I just dont know what to do for the best.

I have no room in my own home for her, I have 3 bedrooms for a family of 6 already! I couldnt deal with it either, i know it may sound awful but i get so upset with just seing her for a little while. I cant stand seing my mum slip away before my very eyes knowing she will never return.

I try my best to put on a brave face for her, but its so hard.

Sorry everyone, you have enough problems of your own!

My heart goes out to everyone out there dealing with this kind of problem. Its awful.

I'm off to read the other postings, and i wish you all the very best. Thanks for taking the time to read this, i just had to get it off my chest.

 

[thompsonsom]

Hi Julianne

Welcome to TP and do not worry about sounding off thats what we are all here for and to try and help in our own way.
You certainly have your hands full with your own family than to have to undertake dealing with your poor mum as well. Do not feel bad that you cannot take your mum in, no one on this site will think any less of you. You do what you have to do in order to help your mum and survive yourself within your family.
Have you spoke to your mums doctor regarding your mums depression as this would probably be the 1st port of call as if she is not being described them already they will probably want to start her on some form of anti depressants. this was the 1st thing my m/in/law was prescribed and what a difference it made once it kicked in. Nobody likes losing a loved one to this dreadful illness and there is a greiving process to go through. Contact your mums doctor 1st and take it from there and come back to TP any time to sound off.
take care
jan

 

[Chesca]

Nada, I don't understand how you can state that 'we will not have any answers' in reply to Julianne's post. If TP and the AS is not providing answers what is the purpose of them? I've received lots of answers to unanswered questions here on TP and to some unasked ones. Information which, had I been aware of it in the first place would maybe have made our lives a little easier, funding information, carer support information, legal information, etc. No answers to AD and it's causes, yes. But there are plenty of people with useful information to share as well as providing support.

Chesca

 

[Norman]

Julianne
I haven't had a good day today,but I think your's was worse.
Julianne the first contact ,the gateway to help and assistance is the GP,contact him/her and talk to them.
Come back to us anytime,we are here for you
all best wishes
Norman

 

[Chesca]

Hi, Julianne

Don't be worrying about posting on the site on a bad day. Many of us end up here ship wrecked and thankful after our ordeal. You may think you are being negative, but I think there is something positive in sharing a problem, even if it is that seeing it in writing sometimes just puts it into perspective.

When was your Mum's last assessment - that which decided she was suffering with 'moderate' AD? I think Jan has it in a nutshell: you need to speak to your GP as a matter of urgency to have the situation reassessed from all angles, inclusive of carer support. As it is, Mum is very vulnerable, at risk and this is all too much of a worry for you to cope with on your own in addition to your own massive responsibilities.

If a nursing home is to be the future, it is tomorrow's problem. Right now, some medical advice/medication may just provide a short term solution. As Jan said, if an anti-depressant is needed it may provide some valuable breathing space, while you decide on the way forward.

In the long term, it is not for anybody to judge the decision you make - you have four children, limited space, and you have to consider whether the life changes you and your family will face, given that it is even an option, are going to be of benefit to anybody. Looking after a person with AD is like looking after a very strong and wayward child - only they don't grow out of it, they grow into it.

You'll do what is best for everybody, I'm sure you will. You have Mum's welfare at heart, but you are entitled to your life, however harsh that may sound. Don't forget, make that appointment with the GP as soon as you can. It will feel like you are doing something positive which will make you feel better. Be kind to yourself, too.

You will receive a lot of support and useful information here from many who have been through much of the same.

Kind wishes
Keep in touch
Chesca

 

[Chesca]

Nada, well that's cleared that up. You were in danger of being shortlisted for the Gerald Ratner Marketing Award.

Chesca

 

[Sheila]

Dear Julianne, hi and welcome to TP, glad you found us and hope we can help a bit by telling you how we have coped. Everyone is different so your decisions may not be the same as ours, all we can do is tell it how it is for each of us. I too think your GP needs to be told of your Mum's decline in health so that he can check to see if there is any medication needed to help her. She may be short of B12 if she is not eating properly, this can lead to extra confusion and depression, it needs checking out. Also, have the home care mentioned things to you? They could help fill in the picture for the GP. Does your Mum have a social worker or a mental health worker? These are the people who can help you to get the best care possible for her. It shouldn't be down to you to sort it, but you do need to report it. My own Mum was similar to this for a couple of years and it breaks you up seeing them struggling to hold on to normality. I remember how I felt, seeing her struggle, but trying to do as she asked and leave her alone. Trouble is, with this illness, comes a point when you can't any longer. It hurts to have to "dob" them in but it's the only way to get the help they and you need to cope with the illness. Thinking of you, love She. XX

 

[gemini]

Dear Julianne

I'm really sorry to hear about your Mum's deterioration. It's obviously a terribly distressing time for you. I'm glad that you have found TP. Hopefully you will feel less alone. Don't ever be worried about posting to 'get things off your chest'. From past experience I've found that this can be a tonic in itself.

I'd like to pick up on a point you made about your mum not wanting to go to day care. When my mum in law was first offered a place at a local centre, we told her that it was simply a local social meeting group for OAP's, and that we were sure she would benefit from meeting some new friends.

I took her for a visit, and she agreed to 'give it a go'. On the first 'proper' day, she was initially very nervous and apprehensive, so I stayed with her for the first hour or so and then made an excuse that I had to 'nip off for 10 mins'. The staff were really wonderful and distracted her by getting her to join in games etc. This made her feel very welcome. She now attends three times a week and loves it.

She had previously not made much attempt to bother with her personal hygiene and general appearance. We now find that as she has somewhere to go 3 days a week, somehow she now 'remembers' that on such occasions she must 'make an effort' to look smart. The fact that she will often wear a purple top with green trousers is irrelavant. I am also convinced that this has given her a focus that has been of real benefit to her. Not only does she have a proper cooked meal while she's there, but she also enjoys the social interaction of 'eating' with friends. She will now often say when we go shopping that she needs this or that, because that's what they have at 'the group'.

Prior to her attending 'the group' the phrase bored to tears often crossed my mind. I would feel so sorry for her. She was so desperately bored. I tried to think of ways to keep her amused and occupied, but as she wanted something USEFULL to do... my options were very limited... I realised after a while that most of the bizarre things she did, were pretty much as a result of her boredom. A bored 71 year old will not normally wrap every item of cutlery up in toilet paper, but a bored 71 year old with AD, thinks that is a very productive way to spend the afternoon.... Do you know what I mean?

Obviously under the circumstances I do agree that you should get your mum's GP to re-assess the situation, but if at all possible, if it is practical and you think it will help her, try yet again to encourage her to go to 'a group' ... even it means a little 'white lie'.

I also take the opportunity in my mum in laws absence to call at hers and give everywhere a good clean up and throw away any items such as food, clothes, magazines and leaflets that are past their best. I can't do it in her presence as she looks at me as if I'm throwing away the crown jewels.... when in fact it will be a 1/4 pound of ham that if I had not intervened would of got up and walked out of the door any moment...

At first I felt this was an invasion of her privacy.... but now I realise that it is neccessary in order to give her the self respect that she is entitled to, but at the same time ensuring that she has a clean and safe environment for as long as she needs it.

Good luck....

Best Regards
Gemini

 

[JulianneGreen]

Thank you all so much!

Hi everyone,

Sorry if i make mistakes, but i am tired after having mum round all day and have had a glass of wine.

Thank you all for the massive support, I cannot begin to tell you all what these replys mean to me. I felt so alone, but now i feal like i have others to share with and get through this with. I am so glad I decided to post.

Mum was great today, she interacted with my kids so well and managed to get so involved she was calling out ready steady go! as my kids played racing games across my living room. A good day for me and mum, and she even ate 2 proper cooked meals, something she hasnt done in weeks!

everyones postings made a difference to me, and each time i saw a new message i felt more able to face the time ahead with mum.

Gemini, Your post particually catched my eye, as tonight I was having a heart to heart with my partner about day care and such like. I smiled about the Purple top and green trousers. Sounds the same as my mum. Her favourite colours to wear together are green and dusky pink, complete with red slippers! I smiled when i saw my mum today, rather than grieved for the mum i used to have who would turn up dressed to the nines in patent heals and a pencil skirt. i looked down at her interesting outfit and hugged her, because she looked happy. And I would rather take her out with a smile in strange combinations of clothes than smart and depressed. And also funilly enough my partner suggested little white lies to get mum interested in day care and has offered to take time off to look after our kids while i go with her for the first few times. You have been most helpful, like everone else here. Thanks so very much.

I hope I can offer my own support to all of you here too as i learn to deal with this, I am a great believer in that the things that we go though only make us stronger and make us more able to help others. Especially scince i have seen this in all of you here.

Take care, and best wishes to you all.

 

[gemini]

Hi Julianne

I'm so pleased you had a good day with your mum yesterday.

I'm really pleased that you found my reply helpful. My Mum in law is in 'early stages' so has really benefitted from the stimulation of having contact with 'the group'. She will 'help' the staff in small ways, such as handing round the biscuits, or helping them to decide what music to play etc. These small acts give her confidence such a boost. In some small way it makes her feel 'useful'. It also gives her the opportunity to discuss any concerns she has with staff rather than her feeling that she is constantly 'burdening' us. Ultimately of course any concerns are relayed to us, but at least she has a feeling of some sort of independance away from us......

Keep posting to let us know how you get on.
Keep Smiling
Best Wishes
Gemini

 

[Chesca]

Dear Julianne

It was heartwarming to read about your day. White lies never did any harm in this situation where everybody's wellbeing is concerned. Let's hope it all pays off.

Isn't there something liberating in letting go a little? I used to get screwed up about the clothes thing because I knew Mum had always taken such care in her dress. I arrived to visit her one day and she had dressed in her 'housework' uniform (not that she did any anymore, she was past it) - a rather elderly skirt, blouse and old cardigan - adorned with an in-your-face diamond and sapphire necklace! I complimented her on her finery and she smiled such a smile that I never questioned her dress sense again! She was happy, what the hell!

You sound as though you have a lovely family and I bet your house is chaos with Christmas coming. I envy you that, believe me.

Good luck with your plans and keep in touch
Chesca

 

[freefairy]

Dear Julianne

I too am a relitavely new member here and i have found the information very useful and the people here to be very friendly and heartwarming.

It is horrible to see our loved ones deteriate at such a rate, every time i see my dad it feels like we have lost just a little bit more of him, and with each and every little part lost we experience a bit more grieving. This is when i try to remember the good times we had when we were kids (i have one older sister, she cannot cope with dads illness so everything is rested on my shoulders so i understand how you are feeling being an only child).

little things like dad filling our paddling pool at the beach, pony rides on his back arround the living room and tying his hair in bunches when he had grown it so long, these memories of him will never fade.

You will have bad days with your mum but you will also have good days, these will be treasured days as you obviously have realised already by the reply you have sent saying your mum has had a good day, when she has a good day everyone has as much a good day too.

On the bad days come and rant and rave as much as you like, i too have had a good rant and before i have even sent it i felt much better by typing down my feelings.

I felt alone but there are many of us out there who need an ear and hearing others really helps.

Hope to talk to you again soon
Take care
Sheryl