Had enough today.

[rosy18]

I do so feel for you Marnie it must be so hard trying to turn your dear Mum on your own.At my last 12 monthly MOT when asked do you do much exercise I replied not really but I do lots of weight Lifting!! Lifting Mum out of bed for her 3 toilet visits throughout the night is hard going.
Like me I know your desperate to keep your Mum at home if possible and I know it's hard having your home taken over by all the visits and homecare but I would use your full quota Marnie.Sending you ((hugs))xx

PT sorry to read your Mums still in hospital ((hugs))to you too xx

All's not too bad here with Mum apart from the singing for the brain Mum no longer wants to go through the front door as she then thinks her Mum will wonder where she is.When we arrive home from the singing I struggle to lift her out of the car as she pulls away from me not wanting to go into our house as she doesn't recognise it and asks me what are we doing going into someone else's houseOnce inside she is fine sits in her chair and goes fast asleep, she is very rarely awake after mid day.

Also she is understanding much less of what is said so I'm wondering how long before she understands nothing ,yet another downturn.

Still trying to get used to the new site
Jorgie back soon I think so hope you've had a fabulous holidayxx
Hope everybody on this thread has had a peaceful Sunday xx

 

[WORRIER123]

Oh bless you Marnie
Dad had some nasty sores. The district nurse gave some cream I have the name at home but as they were on his heels they said to but his feet on pillows in bed which saved turning him
When he was hospitalised his sores were actually worse than being at home as the night staff wouldn't change him or the bed if he wet it in the early hours. They left it for the morning staff.
Big hug x

 

[Lavender45]

Well some good news from me. I've just called the ward and mum wasn't aggressive at all yesterday!!! Maybe we have this cracked at long last. Woo hoo, go mum, go calmly that is. x

 

[Lavender45]

I'm a bit of a lurker on this thread but I find it one of the first places I look as there are so many people here wishing to share.
@Marnie63 youre posts are so close to my heart. MY SIL is in hospital at the moment and the family are fighting to get her home. She is at the final stage of dementia, not speaking apart from the odd word and unable to stand or walk. Tomorrow is the family meeting to see what's needed to get her home. Reading your post helps me speak to the family about the challenges ahead. You are doing such a great job albeit it could be at the expense of your own well being. Bless you.

Lavender, your mum amazes me, as I did say before it reminds me so much of my own mum. I'm so glad you got posit.ive feedback from the home. I bet today your step is lighter.

Have a decent day ladies and I hope all is positive for you.

Mia she amazes me too, she's as feisty as they come!

There's nothing wrong with lurking so long as you know you can join in at any time. You you are already part of our thread whether you know it or not and we're glad to have you with us. x

 

[Marnie63]

Better day today. Two carers came for six hours! It was wonderful to not be involved in the morning washing and dressing session. I think that's the one I need two people for going forward. I was able to go and buy food and the two ladies were also able to move mum from bed to wheelchair, then to recliner, then back to bed for a doze, then back to recliner. So much easier with many hands. Physio came and did some upper body and leg exercises with mum, most of which she was able to do quite well. I really hope they see improvement as I think they may extend the visits, but if no improvement then clearly they need to draw the line somewhere. If they stop, I'll get someone in privately. Unfortunately, they were not happy to let mum do some stands because of the sores on her heels. I wanted them to, but I think Elf and Safety doesn't allow that. Never mind. We'll do some with the carer on Friday!!

Glad to hear some good news about your mum Lavender. MIA - kind words, thank you. I've had so much help here reading other people's stories. Maybe mine will help someone too. And for me it helps to offload! Like Lavender, without this site and this thread I would have been confined to a dark, padded room a long time ago (though maybe they do leave a light on!).

Big hugs to everyone else, for your support, and for being here.

 

[Lavender45]

Morning everyone. Glad yesterday was a little better Marnie. Hope today is similar for you. My fingers are crossed.

I has intended to go in to see mum this afternoon, but I called and she's aggressive again this morning lashing out at staff and putting herself to the floor so I've decided to play hooky and not go in partly for me as I just don't want to face that mood, I've been there so often and partly for mum as my presence will not help one iota. I thought maybe we had turned a corner aggression wise, but maybe we only had a look around the corner and didn't fancy it. One of these days it'll happen, the corner will be turned sooner or later!

 

[LadyA]

Double edged sword, that though, isn't it @Lavender45 ? Because your mum turning that corner means, most likely, that she has deteriorated more.

 

[Marnie63]

Things not too bad here today, had two carers again for the morning session. That one is the worst - so much to do. Have emailed agency saying that's the one they must send two carers for each time, eventually. What I struggle with is overlapping jobs - there we were in the middle of applying a new dressing to the wound, and there was a knock at the door. There's just so much damn stuff going on, on top of every other basic thing that needs to be done. But, I'm still hoping that once all of it calms down, things will get a little easier. Latest thing that pushed me over the edge to tears was the new reclining wheelchair (tilt n space, I think they call it) arriving, but the footrests are so high. No explanation of how to adjust, no instructions left! So me and the carer had to put lots of padding under mum's feet. Mum's legs are short anyway, and this thing must be set up for someone who is under 4 foot! It's OK apart from that, but so damn frustrating. I have a physio and OT here on Thursday, so hope they can sort it out.

 

[jorgieporgie]

Hi Everyone, I am home and wow what a change on here, just trying to get to grips with it and will catch up with you all tomorrow. Tired and ready for an early night. Hope your all ok xxx

 

[Amere]

Rant Rant Rant. Fed up to the back teeth today. Had a bad night and all day, Mum talking to the clock and asking her Mum to come and get her. Had the gas engineer here whilst she was doing it,he must think it's a mad house.
Waiting for results from the bloods and urine sample DN's took on Friday. No let up today just constant, my head is in pieces. Why or why cant we just have one full week of peace instead of a couple of days.
Sorry all feel better just putting it down on here. Maybe a good one tonight. Fingers crossed and everything else. Even the cat is fed up everytime she goes out to do her business Mum goes and brings her back in. (HAVE TO LAUGH OR WILL CRACK UP)

On a serious note, I find the biggest trap is to think you are winning during a run of good days and then bingo the person you're caring for has a sleepless night with all the trimmings and so do you !

 

[Marnie63]

Marnie, this is so very, very hard for you. Perhaps, just this time, it may be better for her to go termporarily in to a nursing home? I know how you feel about being the only person who can give Mum the best one to one care and I am sure you are right. I read all your posts whilst she was in hospital, which was horrendous for you both. However, it now needs 2 people at least to sustain the level of care you were able and have been able until now, to provide on your own. There will be nothing to feel bad about Marnie. Nothing. No-one could do more than you are doing and have done, but sometimes the numbers game (number of people required to provide care) just defeats us. I know well that feeling of helplessness and being out of my depth, it's so ghastly. I had to surrender my own Mum to temporary respite recently as you will remember from my post, for the same reason ... one person could not sustain the level of physical care my Mum needed at that time. It won't be letting go as such Marnie, but maybe just accepting that temporarily, others may be able to take better physical care of your Mum than you are able to due to her current skin problems and the number of people required to turn and lift her. Will be thinking of you.

Thanks Carmar. You speak a lot of sense, but I'm not giving up, not yet anyway!

What is the latest with your mum? I'm not following as much as I was on here so have missed updates. Is your mum back home now? I remember you were grappling with some pretty serious health issues of your mum's. I hope things have improved somewhat for both you and your mum.

I SO wish I could step back in time to how we were before. That was all so easy now, in hindsight, compared to what I have now. But I can't, and nor can mum. She had a stroke and is now immobile. And I still can't get my head round it all really ...

 

[Moggymad]

@Carmar & @Marnie63 I am blown away by the depths of your love for your PWD & your total selflessness in your continuing struggles. You are very special people in my opinion

 

[LadyA]

@Carmar & @Marnie63 I am blown away by the depths of your love for your PWD & your total selflessness in your continuing struggles. You are very special people in my opinion

Indeed!

 

[LadyA]

@Carmar We will have to agree to differ!
Even on those days when you don't want to get up and face the day ahead - you do get up and face it all again. And of course you think about yourself - if you didn't, you'd never figure out ways to keep fighting on. Nope. Mahoosive cyber bouquet is indeed yours!

 

[Marnie63]

Yes, Mum came home after 3 weeks. Too long a story to go in to in detail but the nursing home were struggling to cope with her because she didn't sleep, partially due to the horrendous double incontinence problems (which still continue). They wanted to start a drug regime to 'knock her out', which Mum had never wanted and so consequently, I didn't want it for her either. The problems with the rectal prolapse still continue as she can never be cured of this due to her frailty and it seemed unbelievably cruel to use a chemical cosh that would only detract further from her quality of life rather than cure the root cause. We soldier on and Mum is happy as she can be here at home because she just wants to be with me. SS have still not managed to get a care package in place due to the fact they won't pay the going rate and consequently none of the care agencies in our vicinity will contract to them. So I am still caring completely alone and as of now have been housebound with Mum for 10 months apart from the 3 weeks emergency respite. I have now taken matters in to my own hands and found a good, reputable care agency at a good rate and persuaded them to tender to SS, so now I wait for the process to be concluded to find out whether I will have help in the future and some respite to be able to go out.

I didn't consider Mum going in to respite as me giving up. I had no choice at that point as I have back problems and was finding the 6 hours of toileting and cleaning up every morning (often bed, floors etc. also) was beginning to impact heavily on my ability to cope with caring for my Mum's physical care needs. I knew it would be temporary and although the respite turned out to be as stressful as caring for Mum (another long story!), I did manage to rest my back and this has in fact enabled me to continue caring for her again. That's why I suggested a temporary nursing home stay for your own Mum. If they are able to cure the sores by turning her and cleaning her up more frequently than you can do at home, even with carers, then she would be able to come back to you without that particular worry on top of everything else. I understand completely you wanting to turn the clock back. That is one of the worse things about dementia ... we think it's bad and we are barely coping as carers until something worse happens and there is a further decline. Much as @Amere has said in a different way in her post earlier. As said, will be thinking of you Marnie and wishing you strength and endurance.

I think I'm about to go into battle with SS as well Carmar. They have now said they are going to send someone to 'observe' the double handed, two hour sessions in the morning. They have confirmed that mum needs two carers (currently it's me plus another for most of the sessions as I am waiting for them to make further carers available to me), but are questioning why I'm currently having them for two hours in the morning. She actually asked why I need an hour! It takes a good hour to even get mum washed, dried and creamed properly (we now have some heel sores and an intimate wound to deal with as well), plus what about dressing and hoisting?! It takes ages when rolling someone. And then the district nurse comes when they are here - so how are they supposed to do that proper care and also we fit in the 30-45 mins that the nurse is here?! They all need to be here as I can't time their visits to the minute - sometimes the DN is late. The carers need to be here in case mum is not in bed, so needs to be put back by hoist, which I can't do alone.

I am not sure if SS are working up to saying they will give me no further funding (in which case I'm going to have to pull on some savings to supplement), or whether they are so cash strapped that they need evidence of mum's needs. It's just another stress and worry, on top of everything else. They've already had the detailed care notes of the last couple of weeks since mum came home.

This morning I had two carers, manager from the care agency, a DN, an OT and a Physio here all at the same time. It was like a house party! And then all the calls, man dropping something off, man picking something up. Calls, calls, calls. AAARRRGGGHH! When will this end?! It's all help, but the intensity of it all is driving me crazy. And in between all of this I have to wash clothes, try to keep everything else in our lives in order, oh, and cook and do mum's meds!

I hope you get Direct Payments Carmar - then you can buy what care you need (though I have DPs but it appears that the current SW is not as flexible on that as before - probably because mum is far more poorly now, so they have to be more 'responsible' for her needs).

I'm sorry if this sounds cynical, but I can't believe any hospital or care home will clean and care for mum as well as we are doing at home. The talk was "if she goes into hospital or a nursing home for a while, then she will get the care she needs and the wounds and sores will heal faster". So why did she come out of hospital with the damn sores in the first place?!

Rant, rant, rant.

 

[LadyA]

@Carmar and @Marnie63 - not to mention that the pollen of lillies can be poisonous!
Carmar @Marnie63 gets her own cyber bouquet! She just needs to find somewhere to put it that the rampaging hordes of visiting care workers, observers and assorted others don't knock her cyber vase over!

 

[Marnie63]

Rampaging hordes! That put a smile on my face!!!

 

[Marnie63]

@Marnie, no, not cynical as far as hospitals are concerned, but reality. They are terrifying places to be for anyone with dementia as most of us have discovered. Rant away, dear Marnie. I will rant with you. Then we only need a couple more to join with us and we can be the 'Talking Point Barbershop Ranters'. It's horrific having all those people coming in an out, I know. Been there. It just adds to the stress for you. As far as questioning the length of care visits this can only be down to money. It makes me so cross because it would cost so very much more for your Mum to have been in permanent care and yet they quibble over an hour's time for 2 carers. Marnie, someone has sent me a cyber bouquet (the nicest thing that has been said or done for me personally for a long time thank you @LadyA and @Moggymad for the original post ). Because of the nature of the original post, in which you are mentioned, I am giving you the white lilly from my bouquet. White for purity of intent and love (which you have for your Mum). Lilly because they should be so fragile but are held up on strong stems (definitely you) and also because they have pollen that brushes off and stains anything that rubs it up the wrong way! Give 'em (SS) hell Marnie. Can you hear me harmonising my rant with yours?!

Thanks Carmar, will have to make sure, the 'rampaging hordes' don't crush the flowers!

 

[Marnie63]

Unbelievable - SS have spoken to the care agency and they will be sending one of their 'senior carers' (excuse me while I stifle a cough), to observe the morning, afternoon, AND evening sessions. But, they wanted to see care agency double ups in action, so the agency HAVE to send double ups that day. Yippee for me! My utterly saving grace in all of this particular episode is the brilliant agency I use, and the owner. Very obliging and very helpful. What would I do without them? The DN is coming on Friday, so at least the 'observer' will see how long that takes.

All seems a bit of a farce. Hope it means they give me extra funding after all this! They cannot question the need for double ups, that's a done deal, but I guess they will be timing the carers with a stopwatch!!!

 

[jorgieporgie]

Evening Ladies,
I have just tried to catch up with you all. Marnie, Lavender and Carmer my heart goes out to you all your all having a rough time at the moment.
I know its not much comfort but would like to send you all a great big hug your all amazing xxxx