More bad days recently

[Anongirl]

I know there isn't any advice because I've read about these things on this forum and know what is happening is inevitable. I guess it's just therapy to put it down.

I'll keep it brief.

I visited mum at the weekend. She seems more confused recently. Asking the same question several times. I pointed at something and she didn't seem to register what pointing actually was and just looked at my face. Her eyes look distant. She's clutching the keys which are hanging around her neck for dear life. Tonight at 5pm she spoke to my brother who told me she was obsessing about the keys again. When I rang her she said he was laughing at her for wearing them around her neck and calling her stupid. Not true AT ALL. I spoke to her at 7pm. She was annoyed/aggressive. She didn't like the carer who came and she didn't make her a meal. Not true. She thought it was morning not evening (this particularly worries me). She got so annoyed at me and said she couldn't understand a word I was saying (I stayed calm and tried to calm her). Then said she wanted to just stand in front of a car. I do worry that one day she might do that. She's threatened it before.

So there she is all alone at home in her completely confused/annoyed/upset/sad world and I just want to bury my head in a pillow and fall apart. I can't bear this.

Is this progression? Sun downing? Another UTI?

I'm tired of trying to work it out and do the right thing. I wish it wasn't my problem and I wish more than anything that my mum could help me through this. But she can't.

 

[tp18]

I am so sorry and saddened to read this. Dementia IS the worst ailment there is, in my opinion. *hugs*

 

[Anongirl]

Thanks TP18. I feel like I am in a terrible nightmare. I have seen some awful illnesses affect members of my family and I can say with certainty this is horrendous. Slow and hurtful in the extreme.

Someone posted recently that the loss of your mind is surely the worse thing. Your mind is YOU.

Thank you xxxx

 

[CollegeGirl]

Hi AG

I'm sitting here desperately trying to think of some magic words that I could say that would help, and failing miserably.

I'm just so sorry that you're going through this, you and your mum. I want to help but feel helpless.

Is there anything, anything at all that I could do?

Much love xx

 

[starryuk]

Hi Anongirl,

I am sorry you are feeling so sad and helpless in the face of this awful disease. It is heartbreaking, especially when your mum is so young. It is probably worth checking for a uti, just in case.

I think for us daughters and sons, this is the most difficult time. So shocking when we first see evidence of the confusion. We want the comfort of a strong mother around and we are only beginning to come to terms with that loss.
At least, that is how it has been for me. Nowadays, I have to be grateful that mum still recognises me (usually) and greets me with a smile. She has been in a CH for the last 10 months.

I wish there was something I could say to cheer you up.

 

[Jaycee23]

reading your post brings back memories of what I went through when my mum was at home and I really empathise with what you are going through. My mum kept her keys for her house round her kneck as she was so worried about losing them. They are so desperate at times and it is so saddening. I felt like I was screaming inside my head and thinking about my mum's misery was the worst I have ever experienced. We did everything to try and make mums life worth while but she seemed to lose the ability to asborbed contentment or happiness in anything around her. She is now in a home and still after nearly a year unable to cope. I think that we have to reach a point in our lives where we accept that we cannot make things better for them and I now have to shut her down in my mind to be able to function like an on and off switch otherwise I would explode. The only thing we can do is offload to TP and friends or family who can listen and support. It is very hard and people who have not gone through this cannot know the misery it inflicts on us. Lets be strong

 

[Anongirl]

Hi CG. I just feel so wrung out. I don't know how to help her or myself. I feel like I'm going round in circles. It seems cruel leaving her living there alone but what can I do? What is the right thing to do?

Everything you say in your post Jaycee23 rings true with me. That screaming in my head and thinking about mum's misery. All of it. I thought it was just me.

StarryUK, my brother is worried it's a UTI. I'll see how she is tmrw. Like I always do. Dreading what dementia will bring each day whilst trying to live a normal life. It's getting harder. I sometimes wonder if I would feel better if she lived in a CH and part of me feels relief when I think about it. Because I wouldn't have to deal with every anxiety about keys and whether she is eating and drinking enough and whether she has a UTI but maybe I will never feel better. Maybe I will always feel I should have done more. I don't know.

Thank you all. You will never know how comforting it is to know you are out there xxx

 

[CollegeGirl]

Unfortunately, AG, in my experience, the right thing to is always changing. The goalposts move and we can't keep up. You/we can only do our best with each situation that arises. This is a hard lesson that I'm still learning - I don't mean to sound like I know it all; far, far from it. It's a struggle, a huge struggle.

I really feel for you and just wish I had a magic wand that I could wave over us all.

After tomorrow morning I will be offline for a couple of days - please don't worry, I'll be back with more useless advice before you know it .

Wishing you a good night's sleep, which I know is hard, and I'll be thinking of you.

xxx

 

[Anongirl]

Thankyou CG. Honestly thankyou.

At first I thought I could cope with just taking each problem as it occurs but I'm finding myself planning for the next problem and then something unexpected happens and takes me by surprise! Then I feel resentment for having to deal with it all. Then I feel guilty and sorry for my poor mum. Absolute torture

Why are you offline?! Don't leave me! Hope it's for a nice reason

Speak soon xxx

 

[CollegeGirl]

No . I'm having an operation tomorrow (gynae/bowel), staying in overnight and back home on Thursday, when I expect all I'll want to do is sleep! But I'll be off work for six weeks so will have lots of time to keep in touch when we can cheer each other up, or depress each other, however the mood takes us !

Sincerely hope you have a better day tomorrow, both you and your mum. Remember, tomorrow is another day. Also, resentment is perfectly normal - this dementia animal is such a robbing b****r. I often feel resentment. Often. Then guilt and shame at feeling resentment. Then anger at making myself feel guilty and ashamed. Then sadness ...

Then I remind myself that I'm human.

Simples.

Forgive yourself. You are a great girl, a great friend and a great daughter. It's not your fault you mum has dementia and you can't be expected to have all the answers. Neither of us can, we just have to keep reminding ourselves.

Much love and hugs, I'm going to bed now. i might have time to look in in the morning xxx

Don't you be staying up too late either xxx

 

[Lainey 127]

Hi Anongirl
I wish I had some advice for you, I can only offer my sympathy and support.
I know exactly what you're going through; it's terrible to see a loved one go.through this soul destroying illness. I hope you all get help soon..


.

 

[Anongirl]

Oh CG I'm sorry to hear you have to have an op. Hope it's not too traumatic and you're back on your feet soon. I'll be thinking of you xxxx

You just made me smile and want to cry at the same time!

I'm hoping she's brighter tmorw. I'm pondering taking her urine to be tested anyway. Lovely way to spend my day off! I'll see what tmrw brings (ironically that's something my mum always used to say and still does!)

I'm going up now. Very best of luck and take care of yourself xxxx

 

[Anongirl]

Thank you Lainey 127. I guess I need to dig deep again and find some strength. I'm just having a wobble xx

 

[cheryl k]

I am so very sorry to hear what you are going thru with your Mom. I am sorry I do not have any advice. All I know this is such a terrible terrible disease. My Dad has alzheimer's and I find myself crying for no reason at all when I let myself have a pity party as my cousin calls it. All we want is to have our loving parents back, but hopefully you still have good days ahead with your Mom.

Take care

Cheryl

 

[CollegeGirl]

Hi AG, just checking in. I hope you had a decent night's sleep.

Good idea to get the urine tested anyway. If it is a UTI, you can get her some antibiotics and things may settle down again.

I've often thought about buying some of those testing kits off ebay or somewhere. I wonder if that would be worth doing for the future?

Dad did ask the doctor once if he could be given some kits to keep at home, but was refused. Not sure why - perhaps they're not very accurate?

Anyway, hope you find your mum improved today xx

 

[Anongirl]

Hey you! I just commented on your tea room thread.

The doc thinks she is constipated so has prescribed Lactulose. He's checked some bloods too. Her urine seems ok.

I got some dipstick tests but I'm not sure how to interpret them. I'm going to ask someone to show me.

Well hopefully by now things are underway. Soon be on the mend.

Huge hugs xxxx

 

[FifiMo]

Hiya AG,

This might help with using the dip sticks...http://m.youtube.com/watch?v=_wW8zD9tEMI


Fiona

 

[chris53]

Dear AG, hope you feel a bit more settled now, good idea on getting these Multistix, very easy just to see if anything changes colour, without trying to work it out if your chemist is helpful, you can buy these over the counter, if any colour changes take this urine sample to mum's doctor for a second test and hopefully the sample will then need to go to to lab,had to do this for my mum a couple of times as she went totally off her head beg some sample bottles from the reception to have to hand!
Please try to get some rest, sending you a big hug xxxxxx

 

[Anongirl]

Thanks Cherylk. I had my pity party on Saturday! I stood in my kitchen and blubbed my heart out to my husband. Snot and tears the full works x

Thanks FifiMo. Much appreciated x

Hi Chris. The doc said the urine looked ok but he could feel her bowel so thinks it might be down to constipation. It's all such a mess. I tell her constantly to drink the bottled water I buy her. She doesn't eat well because the carer does her a microwave meal and she eats chocolate and crisps and whatever else she finds. I buy her other stuff but I know she will sit and eat a whole pack of chocolate and call it lunch. The bread goes mouldy in the cupboard.

Spoke to her morning carer today who said she will prepare her lunch and leave it in the fridge from now on. Whether she will eat it is anyone's guess.

She's alone too much. The carer said it today, her neighbour said it and I know it but I have a young family, I work and don't live nearby.

The guilt is killing me. When people tell me how lonely she is I just want to cry. I'm starting to take it personally even though they may not mean it like that. She's become my responsibility in everyone's eyes.

I'm hoping she will stabilise if the constipation subsides but I have a horrible feeling this is just the start of another phase of dementia.

I'm terrified.

xxx

 

[cheryl k]

Hi AG

I sure hope the pity party helped. My problem is that I am having too many recently as my Dad is progressing and his alzheimer's is progressing.

I sure hope the medicine works for your Mom. Take care of yourself especially having a young family to take care of.

Cheryl