So so distressed, inconsoleable tonight

[catbells]

Mum on 2nd day of lorzepam, more tired today. Medication taking effect. Had a sleep in the wheelchair this afternoon (a first), 1-2-1 carer (this has been put in place to keep her safe - so aggitated getting out of the home) has been with her since 9.30am taking her out in the wheelchair, Mum waving at the cars and even in her own way asking the postman to take her.

Carer said Mum was calmer not so much asking to go out, probably because she took her out and they had been down to the door looking for me about 3.15pm, but got back to the flat about 2 mins before I arrived. Mum seems to enjoy the company. However Mum is still quietly pleading with me to take her home. I think my visit opened a can of worms. I took her down the corridors again and to the doors, quietly telling her this is her home whilst we wait for Dad to take us to our home where we can be together. I feel as though I`m letting her down so I`m a mess tonight. I have cried tonight like i`ve never cried before, since 9pm - I can`t stop,very distressed. (On my own, hubby away and back tomorrow which is good, becauses I can let the tears come in private). I heard a phrase on the tv tonight which triggered the distress ----"its like a bad dream a living hell` ----and this describes what`s happening, hence my stress tonight. How aware is she? She is obviously in some distress and probably frightened and I can`t make it better for her. She doesn`t deserve this. they can`t make it better.
I don`t fell guilty, I wish it was all over and then she would understand why she is where she is. We don`t know how much aware she is, keeps asking to go home, please please take me home. Her words are quiet and slurred due to the anxiety-relieving drug, but nevertheless she pleads with me. Does she remember or does she forget her pleas, no one knows and it is this "distress she appears to be in" that is destroying me tonight. I feel her disappointment and frustration when I turn away from the main door wheeling her back down yet another corridor. Her head does down and her hands start to shake. I hold them gently and quietly try to keep reassuring her that she is safe and I love her , this is her home until Dad comes for us when we will be together.
Sorry - I just can`t take much more of this, its been a terrible few weeks and although she is calmer and the risk of her getting out is nil, I am resting easier, but it isn`t getting any easier for us both. At least I`m still walking the path with her, holding her hands and I won`t have any regrets.
bye for now
Heather x

 

[BeckyJan]

Hello Heather:
I feel for you and want you to know that many of us will be reading and understanding much of what you are feeling - having walked a similar path.

Whilst there will be no improvement in your Mum's health I think you will find your own adjustment will come and then hopefully it will be easier for you to handle.

Its a very hard path and I am sorry you have to walk it. I hope you find TP helpful, there is alot of experience advice and emotional support - please use it.

I hope tomorrow is better. Best wishes

 

[mort]

Dear Heather, I don't know anything that I can say that in will make things better, but I have read what you have written and my thoughts go out to you. I am new to all this and the stories that I have read move me greatly. The fact that there are all these people out there sharing and caring is heartening, the sense of community is humbling.
Mort

 

[Tess810home]

Doing your best

My heart breaks for you Heather. Clearly you are doing your best for your mum but that doesn't make it any easier for you, almost swapping one set of problems for another. However, as long as your mum still feels loved and cared for you have nothing to feel guilty about.

Just because mum is in the home does not mean you don't still walk this path together. Hopefully your mum will adjust to the new surroundings and before too long will begin to enjoy some quality of life there. No-one would find it easy dealing with what you are dealing with, but stay strong in the knowledge that you are still there for her and are doing what is best for her in the end, even though it's torture for you right now.

Let the tears flow, they can be very healing.

All the best.

 

[catbells]

Thank you Jan, Mort and Tess. I moved Mum 12 months ago this week to a EMI unit 3 mins away from me and in an area she was familiar with. I had to move her with her permission as understanding and reasoning and gone before I realised and I only realised there was something seriously going on last June due to major changes in character behaviour. I thought memory loss was just old age (she was 82yrs old)She has been declining over the past 11 months, refused to leave the home since June this yhear, even to walk in the secure garden, but a dramatic decline about 4 weeks ago when she started to ask to go home and tried to get out and became very very anxious. Mum has cardio vascular mixed dementia diagnoised last December as severe, 4weeks after I moved her. You can read all the books/fact sheets and think you are prepared, it helps to understand what is happening, but does not give you an inkling of the emotional side for both parties. I found TP so supportive last year, and have from time to time posted for info or to off load. During good periods I have been able to support new members who are searching for support/information and I have felt good at being able to pass on my experience so far, to reassure and send thoughts out and I thank you too tonight, it is so comforting to have someone at the end of the TP post/email/text which is the way I find best to off load, otherwise speaking/phoning more difficult due to the distressed to speak. Take care and thank you. Heather xx

 

[Loopiloo]

Dear Heather

I do ache for you, such heartbreak in your post. How true, no amount of reading, trying to prepare yourself, gives you an inkling of the emotional side for each of you until you are going through it, living it.

Yes speaking, phoning is immensely difficult, and this is where TP is such a lifeline. So many truly understand and feel with you. I hope you feel a wee bit better after writing, and get some sleep, some rest, tonight.

Thoughts and love

Loo xxx

 

[susanne1964]

Heather, my heart goes out to you. All I can say is that your mum knows you love her and you are doing what is best for her and for you. I never thought I would say that to be honest until I put my dad in a mental health unit two days ago .

i do not think any of us thought we would be here to be honest, but stay strong. My little piece of advice is when your friends phone and ask how things are going give a quick reply and ask them how thier life is going it sort of takes your mind of what is happening for a while

we need to stay sane in order to get through

thats my motto for the day

take care
Sue
x

 

[Grannie G]

These pleas to go home are heartbreaking Heather.

Are they constant or periodic?

When my husband asks to go home I am able to say `later` or `not till 5 o`clock`. Often he either becomes sleepy or it gets darker and he no longer needs it as badly so I am able to distract him.

The hardest for me is when he says `please`. It only happened for a short while but it was very upsetting.

I wish I had an answer for you.

 

[Pheath]

Dear Heather - hope this morning and today are a bit better than last night for you, the feelings you describe are heartbreaking and it is good you were able to have a long cry as it really helps to get it all out. All i can offer by any way of consolation is that this plea to go home is sometimes temporary and does pass or lessen and wherever she was would probably be asking the same. Witnessing this awful & cruel illness really does tear you apart and even though at present we're at point where we're having to consider a residential home fear that emotionally it's going to be a lot harder to deal with even if we're spared the physical jobs. Remember though you are absolutely not letting her down and are doing the very most for her you possibly can, just being there at some level she'll know you're by her side. Go well today, you're not alone here. Pam x

 

[ooster22]

Dear Heather - I feel exactly the same about my mum. It absolutely rips me apart when mum cries and begs to come home. The only thing that has kept me 'sane' (ha) is the constant reassurance from the staff at her CH that when I am not there mum is fine. Also, when we take her out on a Saturday I never get any pleas to be taken home or any tears. The heartbreaking begging and distress have only ever been when I have been alone with her at the CH.

Have you asked staff how your mum is when you're not there? Does she ask for you when you're not around? Does she ask to go home? It seems with this awful disease that it is only those who are closest and love them the most get these gut wrenching outpourings. I have, for the moment, stopped visiting mum during the week - I FEEL ABSOLUTELY AWFUL for not visiting, miss her terribly BUT ... OH went in on his own and visited her Wednesday, she was pleased to see him (although he doesn't think she knew who he was) and did several circuits of the CH with him. When he said it was time for him to go, she said "ok, bye" and off she went. Didn't plead to be taken home, didn't ask where I was, no distress. I have no doubt it would have been a different story if it had been me visiting.

One of the staff said something that stuck with me when I was so upset at mum getting so upset. He said that dementia sufferers see the person they love the most and suddenly connect - 'that's the person I should be with, why am I not at home with them?'. It is that connection which they don't have with others that triggers the distress, but it doesn't necessarily mean that is how they are or feel all the time, just when they see their loved one.

None of that helps when your heart is breaking - but you ARE doing your ABSOLUTE best for your mum.

Sending you empathetic hugs and love

xxxx

 

[Nebiroth]

If it is any help, it is quite likely that your mum would be issuing her pleas to go home even if she was at home.

Many people with dementia express a desire to go "home", more as a desire to go somewhere that is familiar as associated with feeling secure, than any specific place.

There is no way of telling how your mum is when you are not present. It is entirely possible that it is seeing you that triggers the pleas, which may be forgotten almost right away. The only thing you can do is to consult with the care staff.

 

[bunnies]

If it is any help, it is quite likely that your mum would be issuing her pleas to go home even if she was at home.

Many people with dementia express a desire to go "home", more as a desire to go somewhere that is familiar as associated with feeling secure, than any specific place.

There is no way of telling how your mum is when you are not present. It is entirely possible that it is seeing you that triggers the pleas, which may be forgotten almost right away. The only thing you can do is to consult with the care staff.

I agree with Nebiroth - it must be so hard to deal with, a parent begging to go home, but from my observations this request may come because she sees someone familiar, rather than it being a thought-out plea. Perhaps you could try and see it that way, rather take the words literally? As Nebiroth points out, she may be wanting a feeling of security, and you can give her that perhaps by being your old self, talking about old things and bringing familiar objects, rather than directly responding to what she says. It must be so hard though.

 

[Pixie1929]

I really understand how inconsolable you feel, it's an awful, awful feeling and it does sometimes feel like it won't stop. I had to shout at myself to stop once because it was like someone had just switched the taps on! I have had more than my fair share of that over the last 11 months trying to come to terms with my dad's dementia. He is now safe and (I think) happy in his CH where the staff have been amazing and lovely when I have got teary when visiting. He also sometimes asks to go home and my mum feels so guilty because she then thinks she should have him at home and be able to care for him, but this is impossible. I just had a bit of a penny dropping moment reading some of the posts that say that he would still be asking to go home even if he was at home, I will definitely share that thought with my mum. It makes me feel a bit better. My mum just says "not yet, not til you're feeling a bit better" when he says he wants to go home although we know that won't happen. When she leaves after a visit she says she has to go "on a message" and will see him later, which I think he accepts better, but he does try to follow her and she gets very distressed about that. Sorry for rambling. This is my first post as well, I clearly need to keep them a bit shorter. Weirdly, this feels good to write all this down. I hope you also feel a bit better for writing it all down. Thanks. x

 

[Resigned]

Hi

My mother has been in a CH for 18 months now and certainly became calmer when she went in than the way she was when she was home.

Although she lived in her house for 30 years, she got to the stage when she continually asked to be taken home, to take her away from this horrible place. We employed live in carers to keep her in her home for as long as possible but in the end she was frantic to escape from this 'prison'.

Try to focus on all the reasons why your mum is in the CH, they are all good reasons and she is there for the right reasons, if you see what I mean. She won't think so, but she will quicky forget.

My mum does still ask to go home sometimes but isn't nearly so aggitated as she used to be, I mostly manage to distract her.

Your mum is safe, warm, fed and clean, and in the end that is the most you can do for her, other than visiting to assure her that you love her.

R

 

[catbells]

Mum now in care home

Hi everyone, after a terrible few weeks and Mum`s wandering worsening pressure for the local SW team and memory clinic to put mUm in a place of safety has culminated in my moving her today into lovely home. I dug my heels in as SW offerred a number of nursing homes, horrible they were, and I said not until I find a place that I am happy with. Memory clinic cannot offer any drugs for the dementia and we continue with the lorazepam (only been taking it for just over a week and I`m told it takes about 2 weeks.
Mum was escaping from the home and SW covered payment for 1-2-1- carer at day & night. The pressure was on on Tuesday afternoon. I said I wanted a homely place for her, they offered two homes, hubby and I visited them yesterday morning and I was relieved that one of them was good. Only 20 residents, lovely informal lounges, and brightly coloured corridors etc. Moved her today. Told her we were going on holiday. To be honest I am so relieved now, she is safe, I`m no longer worried about the stress on the resources in the EMI extra care unit now, the carers there going the extra mile and all very tearful this morning, but all very worried about her, I will now be able to step back a bit, the new home owned by Gold Care Homes, taking much of the pressure off me. Mum is still walking and walking and walking and walking all her waking hours. Today she tried all the doors, wouldn`t use the strange new toilets, didn`t have lunch etc such a traumatic day for her. She is fast asleep now. I feel relaxed now and at peace with myself. She is in a dementia unit staffed by highly trained nurses/carers and all have been very supportive of me too today. This has been an awful journey and it isn`t over yet, but I have no regrets. I hope this may help others who are struggling, as I have done over the past 2 years, to do the right thing by their loved ones. Perhaps we have been lucky, but the love and care shown to Mum and I from the EMI unit this morning when I moved her was overwhelming-love and empathy and I received the same treatment from the new care home.
I am exhausted and will sleep well tonight
Heather x

 

[Izzy]

Heather I am so glad that you feel that your mum is safe in somewhere you like. It must be so hard for you. I hope she settles well. Take care. x

 

[Petrina]

Heather - I'm glad you found a good place for your Mum and I hope you can catch up on some rest now.