Had enough today.

[HillyBilly]

Am reading and following even if not posting much (we have a house guest plus the polytunnel seems to have gone into production overdrive so I'm surrounded by cucumbers, bottling equipment, saucepans and demijohns).
Well done Marnie - it's a whole new steep learning curve for you I bet. I hope you manage to get used to the new routines and I especially hope that you manage to get your well-deserved holiday next month.
Lavender so glad to hear about your Mum's placement and am keeping EVERYTHING crossed that it works out long term.
PT sorry to hear about your Mum and you too not feeling well, that sucks.
Much love to all x

 

[Lavender45]

Evening all.

I'm not sure how mum is to be honest. I've respected the home's advice and I've not been in to see her yet as she needs time to settle. I have been ringing though and I've made it clear that I want to know if she's agitated or aggressive or violent and I thought we were doing OK. The home called Wednesday evening to say mum had been agitated, but that they had been able to calm her and all was well, she was settling down nicely.

Forward to today and mum didn't sleep at all last night, she wouldn't go to bed, wouldn't accept her room was hers and this morning she refused to allow the night staff to help her dress, but she did allow her one to one to help when she came on shift. Mum always sleeps, it's one good thing in all of this, but it's one night so I was determined not to stress. I asked has mum joined in with the activities in the home, the answer was errr I don't know. OK she didn't know, but she wasn't fussed either. Tbh I wasn't too happy about that the total disinterested, but I'm trying not to micro manage too much so I let it go.

This afternoon I got a call from mum's consultant as she visited mum yesterday (it was agreed she would go in to see her within the first week). She said mum was sleepy when she saw her, but able to answer questions and that her behaviour in terms of aggression etc was much the same as on the ward, errh no, mum's been doing pretty well all things considered. No not really, the staff reported to the consultant that mum had got up agitated one night and used her walker as a weapon barging at staff and trying to throw it at staff and using it to try to force or break windows. I knew nothing of this.

I've called the home and asked about the walker incident, the nurse on duty knew nothing of it and there's nothing recorded. I now need to speak with the unit manager who is on duty tomorrow. I'm not sure what I think now, I don't know who is telling me rubbish, the home or the consultant. I'm not sure exactly what mum's behaviour is. I don't know who I trust, but I know my turning up in the home may not help mum. I'm torn. X

 

[Marnie63]

Today was a bit better. This is really hard, but in spite of that, it IS so nice to have mum home and not do those tortuous visits to the hospital. But also today mum said a lot of "why are you doing this to me?" and "I'm weak, stop torturing me" when myself and the live in carer have been dressing/changing her. I can see how hard it is for her to do all this unnatural physical movement, and I feel so for her. It's also dreadful to watch. As and when the agency can start providing double up carer visits, I will leave the room. This evening she said something about going somewhere, but then said "but I can't, as I can't walk".

This really is death in slow motion and I absolutely hate that it is happening to my mum and that I have to watch it. I HATE DEMENTIA!

I have a very strong feeling that mum is on the last path of this dreadful, hideous disease. In nearly five weeks since her stroke she has deteriorated so much, mostly physically, but mentally as well. She must be about a stone lighter. Sadly I can't stand her on the scales any more to weigh her! She can't walk, can't transfer, eats very slowly and gets tired doing it. Her quality of life is so much worse. I feel so sad for her.

Best wishes to all, hope you are all OK. I will catch up with everything over the weekend.

 

[LadyA]

Can do nothing to help, Marnie, but send you a huge hug. (((.)))

 

[HillyBilly]

Oh Marnie, it's so tough on you (and your Mum). You're doing your utmost best for her, she will know that, I'm sure, deep down. Huge hug x

 

[Marnie63]

This morning's comment - "let me be with God"! She was dreadfully tired this morning, but we have hoisted her into the wheelchair. While the live in is here we are putting her to bed for a few hours in the afternoon, then hoisting her out later for dinner. We have a sling you can sit in all day, breathable and comfortable. Hopefully once the recliner is here next week, she can have her afternoon nap in that. Mum's sore/wound on her bottom is looking worse. Not sure what the DN will do about it on Monday. Of course I want her to heal it immediately, but that's not going to happen. The pressure sore on one heel is bad now, very dark, but at least we have the right barrier cream for that now. I'm not sure how both of these issues have progressed, but I don't think it's down to anything bad happening, it's just the way it is as she's now so immobile.

We had a power cut this morning, briefly, which reminded me that I need to talk to someone about the bed. We get a lot of power outages here and mum pressing on the metal of the bed when the mattress goes down is not appealing. I wonder if I can get a replacement mattress which is not powered, but still does the job. She does not lie in it all day. But, I'm not an 'expert'.

I am about to go out for walk . I feel truly dreadful, stressed (but now for different reasons) and worried. Worried about her suffering and worried what I'll do if the agency cannot provide double up carers asap. I can't change agency, it would just be too much work and worry right now.

 

[jorgieporgie]

Marnie I do feel for you and pressure sores are terrible to cure. Mum got one on her bottom we kept getting it better and then it would come back with vengeance plus it's so hard to keep them off it. Also Mum got one on her heal too, I think it is with been immobile and in bed a lot of the time.
We were told to elevate her leg on a cushion with her heal hanging over not touching it or the mattress, if that's any help to you. Warm hugs xx

 

[Marnie63]

Well, I got out for my walk yesterday, and it was very nice. I was only walking on the flat, and it wasn't far, two miles or so, but while I was walking, I didn't feel great physically. I guess I haven't recovered yet from the month of hospital joy and also the challenge continues now at home, but at least we ARE both at home now!

The live in carer is very good. The first few days were so very challenging. So many towels, so many sheets, all soaked with urine as we were struggling with the supplies we had. This was partly down to me not pre planning (but how? - I was either sleeping, in hospital, or travelling to and from the hospital!) and partly down to perhaps me not asking for someone to give me some supplies before she came home. Now I have two large packs of industrial pads that I had ordered, plus we have received the samples from the continence clinic, so no more accidents (so far). Also, a friend of mine visited in the week and stayed over. I think she wanted to see mum as she's so ill (our families have been very close since I can remember). It was lovely to see her and she really mucked in, but what with the challenges, live in carer, and house guest, it really was too much. Apart from two hours when the carer takes her break, she's here all the time. I am SO pleased she is, but it's still someone in my home. This will all change next weekend when she leaves. So I'll have my home back for just me and mum, but I will only have three care calls a day. Hope I can cope in between! I have decided on three calls as, again, the thought of four visits a day is just too much. We'll have to see how it goes.

Mum is getting weaker. She seemed to be able to shuffle a bit and lift herself more in hospital, but now she can't help us much, but she does seem more alert when she is fully awake. Really hard to see her go from being so mobile, to completely immobile, so suddenly. I have to keep reminding myself that we are now dealing with the fallout of not only age and dementia, but also a stroke. Which again brings me to hoping mum does not suffer this for long. Each time we change/dress her, she tells me to stop torturing her. It's awful. Mentally she's much worse too. Most mornings she has no idea who I am, but eventually seems to recognise me.

I'm sorry I'm just 'dumping' at the mo, and not supporting, but I need to! This is extremely hard now.

 

[Marnie63]

You must be exhausted Marnie and have had no time to recover before your Mum has come home after your month long hospital visiting (which is totally exhausting in a different way, I know). It sounds beyond hard even with a live in carer. Thinking of you and your Mum.

It is Carmar. I am TOTALLY WRECKED! But, it's still better than the hospital. It will ease in time, I hope. Fortunately, there is still the 'fall back' of calling 999 if things get desperate (if medical need of course), getting SS to find emergency temp care in a nursing home, or of course permanent nursing home, but am not quite there yet!

 

[MollyD]

Sending more ((hugs)), Marnie.

Group hug all round. X

 

[Marnie63]

Thanks Molly and thanks to everyone else for their continuing support. It means so much. One day I will do my best to meet and thank all of you good people in person.

Has JP gone on holiday yet?! Hope you have a great and relaxing time JP. Have several G&Ts for me please!

HB - hope you are OK, am waiting for photos of the great meet up.

How are things Lavender? Really do hope your mum settles well in time in that home.

PT - how is your mum? Will she be in hospital long? Have they found anything they can help with? I hope she's OK and relatively calm in there. Amazingly mum spent 4 weeks in a hospital and I didn't get any calls - but most of that was down to the fact that she was not mobile and was also very fatigued after the stroke. All bad stuff for mum, but it helped in a way to make the hospital stay more bearable for her.

 

[rosy18]

Just wanted to say I'm thinking of you all before TP goes down Feel I'm having withdrawals alreadyxx
Marnie I know how you feel about too much care it can become quite intrusive but needs must. I know I sometime feel I don't want anybody coming in and then when I'm struggling to get Mum on the toilet I realise now I just couldn't do without them.xx

PT hope everything is improving and your Mum is feeling better, you too xx

Lavender how you doing if tomorrow is your first visit to your Mum PG it goes well and you get the correct answers re your dear Mums activities over the last few Days! xx

Mollyd we'll need that group hug to get us over the next few days with no TP XX

Take care everyone xx

 

[jorgieporgie]

Hi Ladies,
No Marnie I go tomorrow, hope things improve with the bed sores and will catch up when I get home.x
Lavender hope all goes well tomorrow with your visit and your Mum is more settled xx
Molly extra hugs xx
Rosy, Harryd, PT and everyone else will be thinking of you all, see you in a week

 

[Lavender45]

Jorgie I hope you have a wonderful time, no one deserves it more.

I went in to see mum today with my cousin and his wife. It was grim. I cannot leave her there I have to fix this. Major discussion with the social worker needed tomorrow. X

 

[Marnie63]

I'm sorry Lavender, that doesn't sound good. I hope you have a productive discussion with the SW tomorrow.

I've had a horrid evening. When mum is sleeping or sitting in the wheelchair it's not so bad, but when we put her to bed, or hoist her into bed to change her, it's the same every time - "why are you doing this to me?", "stop torturing me like this", "I'm embarrassed". Every time, and it's breaking my heart. She has new sores developing on her toes, but we cannot understand where they are coming from as there has been no pressure on those areas. Maybe it's just the way her body is reacting to the lack of mobility and blood flow? Hard, as they seem to be coming thick and fast. District nurse is coming tomorrow, but no idea what she is going to do. I've also got the SW coming in the afternoon. Must make myself look half human for that visit as she may take one look at me and decide I'm having a breakdown and to take mum away! Only joking. I do look pretty grim though, just not interested in looking after myself at the moment, which is very unusual for me.

I say again, I hope this does not last for long as this is no life for mum. But hey, things could get a whole lot worse yet. Life feels very grim at the moment.

 

[MollyD]

Oh, Lavender, I'm gutted for you and your mum.

Sending you a (((hug))) x

 

[MollyD]

Wishing you stamina for another day, Marnie. You're doing such a good job but it's just so, so hard and sadly won't get easier.

Hi to everyone, hope you all get through the day without TP. Let's think of each other anyway. Jorgie, Aisling, rosy, LadyA, HillyBilly, Worrier, HarrysD, Sam, Polly, Dolly and.... Hug x

 

[jorgieporgie]

Morning Ladies,
Lavender hope all goes well with S Worker today, extra hugs to you and your Mum xx
Hope everyone as a nice time Ireland and look forward to the photo's.
Marnie as Molly says your doing wonderful.
Hope you all have a manageable week. ((((HUGS))))

 

[Marnie63]

Hope everyone is doing well. I guess the guys and gals are starting to meet up in Ireland by now? Am looking forward to seeing photos. How are things Lavender? Can't believe your last post, but sounded like things were really bad for you to have said what you said. Really hope there's some positive news coming your way soon.

Slowly getting used to things here, it's amazing how we adapt. It didn't help that we had a horrendous few urine fun packed days when mum first came home, but things are better now. Clearly they would be even better and easier if mum was catheterised, and I am actually considering it now. District nurse came yesterday and said they may recommend this as a temp measure anyway as mum's wound around her bottom (not pressure but moisture related) will not heal easily due to it never being dry. It all makes sense as it seemed to all start up after the catheter was removed. Urine in wounds is clearly not a good idea. My house is filling up with equipment nicely! A ramp arrived today so that we can wheel mum out of the house and into the garden. A better pressure cushion also arrived today for her wheelchair/any other seat, but has to be pumped up and set by the DNs, hopefully tomorrow. And a gel cushion too. We're not clear if that's for her heels, or for her to sit on! I have also ordered some sheepskin heel protectors for when she's sitting. HSL riser/recliner arrives on Thursday. She will have to be hoisted into it, but at least she can recline and doze in it during the day. Must protect it well from any accidents!! Cupboards are jam packed with every kind of wash/dry cloth, spray, shampoo caps, pads, barrier creams, bed sheets. It's a whole new world!

Some bad news, even though SS have agreed funding for double up carer visits, agency cannot provide that yet. I'm hoping in time they can at least provide a few as I cannot take funding for something I'm not getting. Could be tricky. I haven't actually got the extra funding yet, it may all synchronise nicely in time.

I need to buck up. This is now much, much harder than what came before. But I STILL am not going to allow this blasted dementia/stroke to beat us!

 

[DollyBird16]

Hi everyone
Marnie can I just say you are amazing, what you have achieved in such a short time is fabulous. You've really done your Mum proud, make sure you take a look around you and see what you've coordinated and results you have got.
Cheers to you.
Sending warmest wishes to all. X