Two years to get this bad. What now?

[Grannie G]

So sorry for the hitch AL and the disappointment.

Do you use a mobile? It was when my husband was diagnosed I bought my first mobile so I could be contacted wherever I was.

I'm sorry also for the additional shock about your friend`s wife.

 

[stanleypj]

So sorry to hear how difficult things are for you just now AL.

 

[AL60]

So sorry for the hitch AL and the disappointment.

Do you use a mobile? It was when my husband was diagnosed I bought my first mobile so I could be contacted wherever I was.

I'm sorry also for the additional shock about your friend`s wife.

Hi, I didn't mention the mobile did I. Yes, i do have a mobile and the hospital have the number but they also have the landline. For some reason, cost? Who knows, they seem to prefer the landline. I've told them I prefer to be contacted by mobile, it's the number I prefer for all contacts, So, just in case i have to stay home. On standby, one call I cant afford to miss. And yes, still waiting. Good job I'm patient. what else would I be doing todaymmm probably driving the twenty five mile trip to visit.Al.

 

[AL60]

So sorry to hear how difficult things are for you just now AL.

Hi. Thanks, at the moment it's just the waiting, waiting for the call, waiting to see if she'll settle, it's endless isn't it. If it's not one thing it's something else. Can't believe how far things have progressed over the last, almost four years. Doesn't do to brood does it. I'll go and do some of the things around the house I've been putting off, firstly though, I'll put the kettle onand take it from thereAl.

 

[Rolypoly]

Putting the kettle on...that’s always top of my list as well!

I had a similar phone scenario this afternoon chasing non visit of the district nurse. I gave the landline number as it’s easier to hear and get to quickly and they phoned back on my mobile. I wasn’t expecting it, and, because I didn’t recognise the number, I declined at first. It’s only because they phoned again straight away that I answered. Lucky I did!

As you say, the all too familiar Groundhog Day. I hope tomorrow goes as planned, with no excuses.

 

[AL60]

Hi. At long last, the long awaited move went ahead. I should be pleased and in a way i am but its still sad to see her in there. Even more sad to hear her shouting at me, calling me all l kinds. I cant help but think underneath the anger she's blaming me for the way she is. My shoulders are broad enough to take it, just as well as i cant change anything. Well, she's as near home now as she'll ever be so other family members will find it easier to go to see her and take the pressure off. That's it for now, it's been another long day so I'll finish here for now. Goodnight from frazzled Al.

 

[Rolypoly]

Oh Al, what a day for you both, but at least the move has been done. I hope your wife settles into her new place and it’s good that others will be able to visit. Wishing you restful night.

 

[Izzy]

I'm glad the move went ahead and hope your wife settles. I hope that you managed to get some well earned rest last night.

 

[Philbo]

Hi Al

I hope your wife settles in to her new "home" and you are able to benefit from her being nearer.

You have certainly been through a lot but of course, as carers, we rarely think about ourselves do we? Reading about your journey and that of others (plus of course, my own), I am always astonished by just how resilient we have to become.

At least this forum gives us the opportunity to share experiences, get virtual hugs, vent our frustrations, cry, laugh and cope with caring for our loved ones.

Best wishes
Phil

 

[AliceA]

Hi. It's not easy is it. My wife has been in the hospital for two months now so technically I'm not a carer but that's not to say I don't care. It just makes me more of a worrier. Every day feels so empty. Lots to do but just can't seem to be bothered, I've lost interest in everything. I realise that before, everything we did, everywhere we went, we went together. I keep telling myself to get a grip, I guess I'm not listening to myself. Well, tonight I'm out with a couple of old friends, we meet up a couple of times a week, I used to enjoy it but now it seems a bit of a chore,, especially now that the days are getting shorter and the evenings cooler. But i Will go out for the evening, and I will try to enjoy itI promiseAl.

It sounds as if you are naturally exhausted, coming to terms is hard and takes energy when perhaps our own is low. You are still a carer, you care, your wife stills need you to monitor, advocate and be there for her.

 

[AL60]

Hi. I'm finding it hard to start this post. No doubt once I do find the words it will be equally hard to finish. Over the last four years I've found each obstacle we've had to overcome, the first visit to the Drs, the memory clinic visits for the first time, the scans and tests, more dr visits, the admiral nurse visit . Every one of these hurdles, the stress of getting her to go, or trying to reason with her, the benefits of doing something or see someone for her own good, when I knew she didn't want to do any of these things. Oh the frustration, the relief when each step was taken, yes, great, she's finally seen the dr, yes, she's agreed to the scans, yes, she was sectioned,. And now she's in permanent residential care, aged just 61. All those obstacles we managed to get round have led to this. Finally, we managed to get her into a local care home and I feel absolutely terrible. I know she's being well cared for, that doesn't really help the way I feel. I know I'll feel better as time passes and she, hopefully, settles in to her new surroundings. But there's always this nagging feeling that her anger towards me is because she thinks I put her there. After all , in her mind I'm the one with the memory problems. And i thought as each obstacle was carefully negotiated that i would feel better afterwards. Any relief was short lived. Just like this last one, the move to a local care home. Ok, she's nearby but she's still not home and never will be. And that's the toughest thing for me to come to terms with. At a time when I should be embracing this time, ok, she loses her temper with me , so what , she still recognises me and I can still make her laugh sometimes even now!. Oh dear, told you it would be hard to stop once I got going. So. Now I will stop, it's lunchtime and I'm feeling snackish. At least there's something to eat in the fridge this time. Hope that this post makes sense and also might help others in the same position , after all I'm not the only one feeling like this so a problem shared and all that and I feel better already. . Must go, the soup's in danger of boiling over, doesn't taste as good scraped off the saucepan. Not quite as frazzled Al.

 

[margherita]

Sometimes it is the small things, such as also preventing the soup from boiling over, which can mark a starting point to rebuild our lives on. The power of everyday life is unbelievable.
Years ago I was asking myself " How can I go on? Where shall I start from?"
I think I can understand what you feel because I experienced it.

 

[Rolypoly]

I can only imagine how you feel but I think I can understand why you feel that way...grief. Grieving for the life you have lost, the future you have lost, the wife you have lost because everything has changed. It will take time as you know to get back on track, to find a new norm, so be good to yourself and take care of yourself. You will get through it bit by bit, day by day. Sending you a big hug as it sounds like you need it, and strength to battle your way through the down times. X

 

[AL60]

Hi again. I went for another visit today. I took our eldest daughter with me. Our daughter spent most of the time sewing in name tags to her mum's clothes. I spent my time compiling a list of the clothing in the wardrobe and a list of her belongings. It wasn't much of a list. Oh I'm feeling so down. I will bounce back, i always do but each time I don't bounce back quite as high. Today's visit went reasonably well, no shouting at me this time, just quietly chatting about nonsense things in her room while I compiled the list and our daughter got on with sewing in the name tags. A perfectly ordinary Sunday afternoon. Its at the end of our visit that it hits home the hardest when i take her back into the lounge area. She just looks so out of place there. Then i have to leave and that's the hardest part. So, I'm here and she's there and that's that, nothing I can do about it except frequent visits. People say, don't go every day, you need a break too. She won't notice. I'll go when I can, it makes me feel better. I can't bear the thought of her there alone. I'll go now, goodnight, Al..

 

[AL60]

Hi again. I went for another visit today. I took our eldest daughter with me. Our daughter spent most of the time sewing in name tags to her mum's clothes. I spent my time compiling a list of the clothing in the wardrobe and a list of her belongings. It wasn't much of a list. Oh I'm feeling so down. I will bounce back, i always do but each time I don't bounce back quite as high. Today's visit went reasonably well, no shouting at me this time, just quietly chatting about nonsense things in her room while I compiled the list and our daughter got on with sewing in the name tags. A perfectly ordinary Sunday afternoon. Its at the end of our visit that it hits home the hardest when i take her back into the lounge area. She just looks so out of place there. Then i have to leave and that's the hardest part. So, I'm here and she's there and that's that, nothing I can do about it except frequent visits. People say, don't go every day, you need a break too. She won't notice. I'll go when I can, it makes me feel better. I can't bear the thought of her there alone. I'll go now, goodnight, Al..

 

[Grannie G]

It`s tough Al. The more rested you are the tougher it seems to be but just keep reminding yourself how you were before you decided on residential care.

 

[Lindy50]

Hi @AL60
I go to see my mum more than most people seem to think sensible. As you say, it makes me feel better, and I can't stand to think of her alone and possibly miserable.
Mum has been in a home for three years now, and what I can say is that I do visit a bit less now than I did, because she needs me less....and I feel okay about that. I know there isn't the same relationship with a parent as with a spouse, but in my experience, I have found that it does get a wee bit easier with time.
All the best to you.
Lindy xx

 

[kindred]

It`s tough Al. The more rested you are the tougher it seems to be but just keep reminding yourself how you were before you decided on residential care.

I so agree Granny G. This is certainly my experience. When I read my diaries from that time, I am horrified.
Thank you and all best to you Al. Kindred.

 

[Norfolk Cherry]

Hi @AL60 I'm not sure what to say, you are all having a very rough ride, and it's been going on at such a fast pace it seems from here. I understand the misery of losing someone you love, for my mum it started at 73, which I thought was young, but for you and your wife, it's truly tragic as she is so relatively young. Quite how to deal with the guilt of moving them into a home is something I've yet to discover. I can't be happy putting her into a home and I can't be happy if I care for her 24/7 which is what she needs now. As others have said, hopefully time will heal some of this. My friend's therapist says it's not what happens, but how you choose to react to what happens. I'm trying to choose to be positive, but they seem hollow words if I'm honest. Do take care, you have so much support on here, I've always read your thread and cheered you on. Your wife sounds a bit like my husband's mum, she suffered paranoia and berated his dad every second of his daily visits. So you are not alone, it's not you.

 

[AL60]

Hi again. First post for a few days. There hasn't been much point writing the same thing day after day. Visit after visit, some better than others. But today was different, i had a day off and for the first time in ages i didn't feel the guilt that I normally do. I've missed a few days, visit free days and felt bad about it. Last Thursday I had a Drs appointment in the morning and the afternoon was lost spending time handing over the car to the garage and collecting another, one day off couldn't hurt. Yesterday, Friday, i spent time at a friend's funeral, two days visit free! I couldn't do it. So yesterday evening I went to see how she was. No, "How did the funeral go" or, "How did the car swap go"? If only. At first the visit went well, laughing along with the nurses chatting and seemingly understanding. Then the nurse left the room. Instantly her mood changed, the usual shouting started, then I ended up wearing one of those fortisip drinks. That was my cue to go. As i walked away all I could hear was her shouting after me to come back, not because she wants to see me, just to give me more abuse. So today has been a good day after all, the last few days the weather has been good, today I actually noticed and enjoyed it. The guilt will never totally go, but today was a start, i hope that this feeling stays with me and gets even stronger. For my own sanity it has to. Hope this post makes sense, it's not easy putting into words the emotions I feel I'm going through. Let's see if this good feeling continues tomorrow and the days after. That's it for now, so goodnight,, Al.