heart breaking feel so alone

[mabbs]

mabbs.... I know what it feels like to not be recognised, and to be blanked.
Wide eyes... scared... trying to get away from me.....
You cant easily talk to friends and family about 'what it feels like' ... they wont understand.

Could you try (maybe) visiting at morning tea-break with cakes/ something yummy ?
Food was sometimes a good distraction for my husband....

(I'm a widow now, husband never in care, stayed at home with me...but I understand how you are feeling).

Tried the cakes bit this morning, eventually he did eat it, it would normally have been a distraction but not today. Try again tomorrow. x

 

[jan.s]

I'm sorry Mabbs that things aren't going well for you. It must be so difficult when Phil doesn't recognise you; I must admit, that rarely happened for me, although I had other problems.

I'm thinking of you J x

 

[nannylondon]

visit this morning with daughter, thought he might be better in the morning, he wasnt, he looked terrified he didnt know either of us, at least he stayed with us, sat at a table, and didnt wander off, he did point at a picture a couple of times, and we said how pretty the picture was, and he said yes. Other than that not much response at all, his eyes just had a frightened look all the time. So Sad, we will go again tomorrow hoping for a better visit for Sues sake but I cant see it happening. Oh for magic wand.

Thinking of you are Mabbs it is helping me reading your journey with Phil I am still in shock at the moment don't want to talk to family or friends about it as I just cry but am getting strength from support from TP as everyone is so understanding

 

[MabbsDaughter]

Hello everyone. I visited my dad yesterday with Mum (Mabbs) and although I get regular updates from Mum nothing can prepare you for the shock of seeing a loved one deteriorate so rapidly. Just a month ago I visited while he was still at home and he knew me. He was happy to see me, and we had a few lovely conversations although he was finding it hard to find the right words. I managed to prompt him to tell me stories from his past. Yesterday he looked petrified of me when I said hello. He would not look at me while I sat there talking to him. If I asked a question like did you have a nice breakfast, he would look at mum and say yes. I showed him old photos of family but he did not recognise any which I am surprised at, I had hoped that if his short term memory had gone some of the past would still be there but there was nothing. I am not sure if this is another phase of his illness or if the medication is maybe affecting him. When we got up to leave mum gave him a hug and he giggled like a little scared child. i said can i have a hug too and stepped towards him, he looked petrified. It is so upsetting to see him like this. I will go again today and see if there is any improvement.

 

[Cat27]

I hope you both have a better visit today xx

 

[Grannie G]

It`s heartbreaking MabbsDaughter. I could feel your distress in your post.

I also hope you have a better visit today .

 

[mabbs]

todays visit was soooo much better, he was happy dont think he knew we were wife and daughter, but recognised we were someone he knew, his eyes were clear no sign of fear, he had a bad night, but other than having a little snooze for 5 mins or so, wouldn't have known it, his colour was better, he was warm, now wondering if he was unwell for the last few days, hope thats what it was. Glad he was better and Sue got to him better.

 

[Cat27]

I'm so pleased for you & Sue xx

 

[disi]

todays visit was soooo much better, he was happy dont think he knew we were wife and daughter, but recognised we were someone he knew, his eyes were clear no sign of fear, he had a bad night, but other than having a little snooze for 5 mins or so, wouldn't have known it, his colour was better, he was warm, now wondering if he was unwell for the last few days, hope thats what it was. Glad he was better and Sue got to him better.

So very pleased for you both xx

 

[LadyA]

That's great Mabbs, for both you and your daughter. You could be right - it's possible that he wasn't well the last few days.. I suppose you'll just have to live in the moment and take each day as it comes.

 

[GingerMac]

I know how you feal

my mum was sectioned about 2 months ago, she was getting worse at home, i lived with her, she is now staying with my brother. i suffer from depression, i could not take it anymore, was throwing things at the wall ext.
I feal so alone almost that she's dead but she's not, there a huge difference in her, in two months she's got worse at remembering, repeating the same thing again and again, almost like a child in ways.

 

[nannylondon]

glad you had a better visit

todays visit was soooo much better, he was happy dont think he knew we were wife and daughter, but recognised we were someone he knew, his eyes were clear no sign of fear, he had a bad night, but other than having a little snooze for 5 mins or so, wouldn't have known it, his colour was better, he was warm, now wondering if he was unwell for the last few days, hope thats what it was. Glad he was better and Sue got to him better.

Hi Mabbs glad that you had a better visit today for both you and your daughter thinking of you both Nannylondon xxxx

 

[Grannie G]

What a relief for you both.

 

[theunknown]

My Dad looks so happy today with his new Spike2 toy
I have attempted to post the picture of him on here, i hope it works. x

What a great photo - and what a great toy dog! Although my mum doesn't seem to now know anything of what's going on around her, we always take our Italian Greyhound with us when we're visiting, because she was so fond of him. The care home like people to bring pets in because they say so many of the residents love to see them there.

 

[mabbs]

bit of a mixed day today, Sons birthday,, had a lovely day with him, daughter went home, missing her already, and Phil has been quote 'restless' today, but I couldnt get any more than that over the phone, going in in the morning, hope he is better then, makes me so sad when he is having a bad day, life seems to be full of ups and downs, sometimes I dont know how to cope with the downs, for some reason just that word restless, has me in tears, silly, how just one word can turn a good day, into a tearful one. Our first borns birthday, and he has no idea, first time he hasnt wished him a happy birthday, in over 40 years, makes me feel so sad, and alone. Will there ever be a time when the tears stop, and dont catch me out unexpectedly. If there is hope its soon.

 

[Silver Lining]

I feel as if my heart is breaking, the tears are flowing. Phil was sectioned yesterday after bout of violence, for my safety he has been sectioned. He looked so lost and afraid, I feel so guilty leaving him there, I have been told I need to be prepared that he may not come home to me.

I thought he would be assessed at home and then asked to take him to the assessment unit in a few days, but yesterday it all happened and we were at the hospital before I drew breath. My daughter in law came this morning, (son is away for work, and daughter lives 300 miles away) and comforted me, bless her, but I am alone again now, how can a house feel so empty, there are so many things I should be doing, bt I cant find the energy/ or cant be bothered, nothing seems worth it now. Cant concentrate on anything.

I rang this morning, he had a bad night and is trying to get out so I wont go in today it will only make him worse, I need to let him settle for a couple of days, I dont know if I am doing the right thing, I know it will upset him if I go in, but it feels wrong to leave him. Oh god why cant they cure this awful disease. I know he is in the best place, and will get the care he needs, but its not helping.

I wish my daughter wasnt so far away.

We all know what you are going through and want to give you a big hug. SL

 

[mabbs]

another day, another visit, he looks fine, but he hasn't a clue who I am, and although he spent a few minutes sitting with me, he kept wandering off, and testing the doors, he will enjoy this afternoon I hope as they are having a dog in and various animals, including meerkat and a skunk in for a visit. ( Yes a skunk)

Tomorrow is the big day, review day, his 28 days will be up on thursday, so it will be decision day. Sometimes it seems as though the weeks have flown by others it seems to have been forever. Son coming with me.

 

[nannylondon]

thinking of you

another day, another visit, he looks fine, but he hasn't a clue who I am, and although he spent a few minutes sitting with me, he kept wandering off, and testing the doors, he will enjoy this afternoon I hope as they are having a dog in and various animals, including meerkat and a skunk in for a visit. ( Yes a skunk)

Tomorrow is the big day, review day, his 28 days will be up on thursday, so it will be decision day. Sometimes it seems as though the weeks have flown by others it seems to have been forever. Son coming with me.

Hi Mabbs hope you get some solutions tomorrow at Phil's review glad your son is going with you am thinking of you Xx Nannylondon

 

[mabbs]

what a day, I was so stressed this morning,best interest decision meeting held this morning, Phil has got a UTI which explains why he was so bad recently, also its now confirmed he has lewy bodies, now they can start some different meds, he is also going to start on sleeping pills, hopefully this will all help. He was still in bed when we got there this morning 11.00am he was fast asleep, mixture of the uti and the fact he has not been sleeping, by the time we finished the meeting, he was up and dressed and wandering trying doors, very agitated, shot past us, and as far away as he could get, so we left him, so as not to make him worse, at least we know its the uti plus he wouldn't take his meds last night, so they are going for covert meds, if he wont take them from now on, should make a difference.

He has been resectioned under section 3, and we have been advised to start looking for nursing homes, we have been given a list, so Son and I will have a busy few weeks looking for the right one. Hoping he will be much better on the meds, and when the antibiotics have kicked in, at least it should help with the agitation, first time he has had a uti. Hoping for improvement by the weekend.

 

[nannylondon]

what a day, I was so stressed this morning,best interest decision meeting held this morning, Phil has got a UTI which explains why he was so bad recently, also its now confirmed he has lewy bodies, now they can start some different meds, he is also going to start on sleeping pills, hopefully this will all help. He was still in bed when we got there this morning 11.00am he was fast asleep, mixture of the uti and the fact he has not been sleeping, by the time we finished the meeting, he was up and dressed and wandering trying doors, very agitated, shot past us, and as far away as he could get, so we left him, so as not to make him worse, at least we know its the uti plus he wouldn't take his meds last night, so they are going for covert meds, if he wont take them from now on, should make a difference.

He has been resectioned under section 3, and we have been advised to start looking for nursing homes, we have been given a list, so Son and I will have a busy few weeks looking for the right one. Hoping he will be much better on the meds, and when the antibiotics have kicked in, at least it should help with the agitation, first time he has had a uti. Hoping for improvement by the weekend.

Oh Mabbs what can I say my heart goes out to you and your family I hate this bloody illness it is so difficult to cope with hopefully the uti will clear with the antibiotics and it lessens the agitation xx