I can't get a sense of perspective

[Anongirl]

I'm getting increasingly worried about my thoughts and feelings about my mum's dementia. I just can't deal with what us happening to her. I don't know how to.

She's 65 and lives alone and desperately wants to be able to live her life. I worry constantly about how she can live her life when it's blighted by confusion and forgetfullness.

Today I watched her and she just couldn't figure out how to open her handbag. Then she struggled to open her purse. She seems unsure about things like money and I know she's losing the concept of how things work. I try not to interject because this makes her think she's failing and also in my mind I want her to succeed so when I'm not with her I will know she can do it. I see people watching her and it hurts. I can't help it.

Simple tasks are getting harder and I can explain a thousand times but it won't make a difference. But I still do it because I want desperately for her to be capable.

She actually looked healthy today but I felt frazzled, on edge. Feeling sick watching her struggle. I feel sad and frustrated and annoyed at what is being taken from her. It makes me treat her differently and i hate that. These are my problems not hers.

I've read threads about people in awful predicaments and my mum puts her make up on and ventures out. I should be so grateful to have her like that but I can't move away from my sadness that this awful thing is gripping her.

It's destroying me and what terrifies me the most is that this is just the start. I want to hold her and beg her not to leave me. I'm so scared.

 

[Jakkles]

What an awful disease that robs us of the ones we love, I feel for you and I feel for your mum. We want to make things better, but just have to go with the flow.
Hugs,
Jakkles

 

[jaymor]

I feel for you so much. This dreadful disease, what can we say? I have always believed that what is on the inside is far more important than what is on he outside. This is surely right with dementia.

My husband looks like my husband, still walks around like my husband but everything else has gone. He had an eclair yesterday, ate it with relish telling us it was gorgeous. He go to the last bite and then started to look at it from all sides. When told to pop it in his mouth, he was horrified that we were asking him to put it in his mouth. He did not know what it was. Seconds after eating 99% of the eclair he had forgotten he had had it and had no idea what was left in his hand. We were thrilled that he had not had to be encouraged to eat it and then in seconds, in despair that he was agitated and frightened by the last bite.

The best we can do is deal with today and don't think of the future. Easy to say, so bl###y difficult to do. I am soon to loose the ability to think back and say "This time last year we were coping well". It is nearly twelve months since my husband's catastrophic drop that was to lead to assessment unit and nursing home. Looking back is not good, looking forward even worse.

Stay strong CG, it is a hard journey we travel, watching our cared for loose their ability to do the most simple things.

Thinking of you,


Jay

 

[Anongirl]

Thank you both. I find myself fighting the flow all the time and as much as I try I can't take every day as it comes. Watching her eyes as she tries to make sense of things. I find it brings up awful feelings of desperation in me. I hate the way it makes me feel. I hate the way she looks at me when I'm trying to explain and she just thinks I'm treating her like an idiot.

I feel the oddest sense of sadness and anger.

 

[dognecks]

Thank you both. I find myself fighting the flow all the time and as much as I try I can't take every day as it comes. Watching her eyes as she tries to make sense of things. I find it brings up awful feelings of desperation in me. I hate the way it makes me feel. I hate the way she looks at me when I'm trying to explain and she just thinks I'm treating her like an idiot.

I feel the oddest sense of sadness and anger.

in the end i settled my mind, with motherinlaw having dementia, she had gone died, and it was just a shell of herself left, because the person i knew wasnt there... you will have to settle your mind at some point too , otherwise you will end up very ill.... your feelings are normal , its a horrid thing to go through , and everyone deals with it differently, i work at night looking after people with dementia, and have to walk along the beach to recover my brain, cause when someones telling you every night ,..every minute are you my husband, when you coming to bed etc etc etc your brain starts asking well are you that ladys husband??? or am i his son ??? so my heart goes out to you, get some me time please this will help...

 

[Anongirl]

Hi Dognecks. I wish I could adjust my thinking, accept it somehow. While I still see her in there I want to fight it, even though I can't. I'm not sure how much fight I've got. My body made me take time out tonight. I got the worse migraine I have ever had. I went to bed and for the first time in months I haven't rang mum tonight.

It takes an extraordinary person to work with people with dementia. You have my complete respect x

 

[Helen33]

Dear Anongirl,

Simple tasks are getting harder and I can explain a thousand times but it won't make a difference. But I still do it because I want desperately for her to be capable.

My heart went out to you as I read through your thread. When I started to be a carer to my late husband, Alan, I felt like you did. It wasn't too long before I realised that it was ME that needed to do the changing. If I'd kept on as I was both Alan and myself would not have had such good quality times.

I learnt a lot from people on Talking Point and also from the local branch of the Alzheimers Society. I got a Speech and Language therapist involved and she, too, was of enormous help to me in finding positive ways of communication.

Once I began to change I noticed that Alan responded very well. It was quite a journey for me but I knew inside myself that being how I was would continue to be unhelpful to both of us.

I do wish you well and hope that you can get as much support for yourself as possible. I believe carers need to feel cared for, respected, heard and understood in order to bring out the best in them. Unfortunately, carers can be badly let down in this area but we plod on and Talking Point can help a lot.

While I still see her in there I want to fight it, even though I can't. I'm not sure how much fight I've got.

It is important to choose the battles. It would be a waste of time battling the progressive nature of this disease unless one was very actively involved in fund-raising for research so that a cure can be found. It seems to me that the best thing you can do with your anger is channel it into something positive like adopting the attitude "I am going to make sure that my mum has the best care possible and that I have the best care possible".

Love

 

[Anongirl]

Hi Helen33. Something you said there is something I've been thinking about a lot. Because of the way I'm feeling it is affecting the quality of the time we have together.

I think if I didn't worry so much about the things she might be struggling with and whether she is safe I might be able to just get on with things. I don't see her for days on end and all I think in that time is how she is coping. Then there are the anxious phone calls. I wrote some time ago about her getting mixed up with the days and the time. It wouldn't matter if she lived with someone who could guide her but she's alone. Alone and confused. I can't get that out of my head.

 

[Delphie]

Hi Helen33. Something you said there is something I've been thinking about a lot. Because of the way I'm feeling it is affecting the quality of the time we have together.

I think if I didn't worry so much about the things she might be struggling with and whether she is safe I might be able to just get on with things. I don't see her for days on end and all I think in that time is how she is coping. Then there are the anxious phone calls. I wrote some time ago about her getting mixed up with the days and the time. It wouldn't matter if she lived with someone who could guide her but she's alone. Alone and confused. I can't get that out of my head.

Would it help to start getting carers involved, do you think? A 'friend' to pop in every day to help a little bit and offer some company, and to be a point of contact for you when you're feeling worried? I've no idea how your mum would take to the idea, so apoligies if it's a no go.

 

[Anongirl]

Hi Delphie. I arranged for a carer to come in in the morning and one to come in at night to give her her tablets. She was dead against it at first but I'm so glad I did. The morning lady now knows mum well and mum trusts her. She still thinks the evening ladies "interfere" if they try to help her but without them I wouldn't have found out she was leaving the gas on. I also arranged for a befriender to take her out once a week. I know she still wants to go out alone and was against that too at first but the girl is very nice and mum seems to have taken to her. I'm sneaking help in!

 

[Delphie]

Hi Delphie. I arranged for a carer to come in in the morning and one to come in at night to give her her tablets. She was dead against it at first but I'm so glad I did. The morning lady now knows mum well and mum trusts her. She still thinks the evening ladies "interfere" if they try to help her but without them I wouldn't have found out she was leaving the gas on. I also arranged for a befriender to take her out once a week. I know she still wants to go out alone and was against that too at first but the girl is very nice and mum seems to have taken to her. I'm sneaking help in!

That's brilliant. That kind of support is bound to help with keeping her independent for as long as possible.

 

[Anongirl]

That was my plan, and is my ongoing plan. Looks good on paper. In fact I read it and thought "what exactly am I worrying about?!" but I just can't get this awful knot out of my stomach and the horrible fear out of my head. Dreading every phone call

Thank you for all your support though xxx

 

[CollegeGirl]

Hey sister

I've been sitting here for ages wondering what to write that might help you. I've had a horrible week, not just dementia related, and am struggling more than usual to come up with anything.

I just wish I could pop round to see you and give you a hug, I think we could be very good friends.

With love and everything else xx

 

[Anongirl]

Hey CG, good to hear from you!

There's no answer is there?

Every day I think "right I'm taking a step back". Today is an example, I rang her this morning and we had a chat. I told her I'm taking my daughter to the circus later (which I am ) so I will ring you tmrw. She told me to have a good time and that was it. I was fine. Now six hours have past and I'm thinking I should be ringing her. I feel awful. What if she's sat at home and feeling lonely? I drive myself crazy!

My brother said to me that if I ring her too much she might think I'm checking up on her constantly and this might increase her anxiety. At first I didn't agree but now I'm wondering if there might be something in it. Oh I don't know!

Your offer of a cuddle cheered me up no end! I hope the other things in your life aren't too serious. I sometimes wonder when life got so complicated!

Big hugs sister xxxxxxx

 

[CollegeGirl]

Hey AG from CG - you see, we must be related cos we both have the same last name (although not sure where this leaves Dazmum, our other triplet )

I hope you and your daughter enjoyed the circus! I think I was a child last time I was at a circus, and the clowns scared me, apparently, and mam and dad had to take me home! I have no memory of it.

I hope you're feeling a bit better by now. Have you rung your mum?

 

[Anongirl]

It was fabulous CG! Took my mind off it all!

No I didn't ring her, I felt guilty right up until we got there but you know what she would be mortified if she knew I felt guilty not ringing her. She would tell me not to be so silly.

Hope you get lots of yummy eggs on Sunday! X

 

[21citrouilles]

I had the same feelings as you for 3 years, always being haunted and worried about my mother's state. It's was devastating for her to loose her autonomy gradually, and crushing for us to watch it. My brother and SIL insisted for a long time for my mother to get help, but she kept refusing, clinging fiercely the her last bits of freedom, because she probably knew that once she got help that things would never go back to the way they were, that she would have to admit to herself that she was loosing that autonomy.

Eventually even she couldn't take it anymore, and she asked for help. She did it because she was afraid for her survival, and she fought all the way.

All of this has been horrendous to witness, and we were still worried when she had the nurses and carers that came in daily, because she was alone for a good part of the day. Also, watching a bright, independant woman loose her clarity of mind and her skills is soul searing.

Now that she's in a NH, safe and happier, at least we're not worried anymore, it has lightened our suffering. I wish you the best, and some peace eventually.

 

[Anongirl]

Hi 21citrouilles. I find it heartbreaking to watch as you say. This woman who has overcome so much. Always been independant. I think that's why I feel this desperation.

She said to me on Thurs, right out of the blue, "at least I know I will die at the end of this". I felt numb. She's lost so many people she loves, perhaps she finds it some sort of comfort to think like that? Utterly heartbreaking.

I've said this before, I don't know if its controversial for some because I know there's never a good age for this, but I wish she was older than 65. I don't feel like she's lived enough life.

 

[CollegeGirl]

I know, I feel like that too. My mam is 73. That sounds a lot older than 65, but it's not, really. 65 does seem young, doesn't it, and you not 40 yet. It's cruel and unfair at any age, but the younger they - and we - are, the worse it seems. I really feel for those really young sufferers in their 30s and 40s, and their families. I can hardly imagine how they cope with the horror that is dementia.

My gut instinct tells me that my mam could live for a long time with this disease. I can only hope and pray that she doesn't.

 

[Anongirl]

When I was young being in your seventies seemed like very old age but now it's absolutely not!

I never thought of my mum as being any age, she was always just my mum! We shared all our interests, she loved fashion and make up. Still does to a degree, she still loves shopping for clothes. I could never have imagined she'd be going through this.

I've thought about that too. She's physically healthy (obviously the past history of stroke). The thought of this dragging out is just unbearable. It's odd how this can shift the way you think. A few years ago I couldn't bear the thought of losing her to death and now I'm hoping for it not to drag on. Madness.