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Terry
21st November 2016, 13:12
love

ccinjersey
21st November 2016, 13:40
Hi Terry

Can you have carers come to your home so you don't have to leave ? If so during the time the carers are there can your wife spend time at a friend's or relatives home for a little break ? Or if carers can't be provided is there a friend or relative that would stay with you for a few days ?

It's a shame you have to leave your home into an environment that is not comfortable for you. I sincerely hope you find a solution that works best for the both of you because neither of you need any additional stress or worry.

Much Love
CCxoxo

Ellie
21st November 2016, 14:41
Hi Terry,

Sorry for butting in, I know it’s in the “Ask MND Connect” section.

It’s always a dilemma isn’t it, this respite lark. We’re stuck between a rock and a hard place in giving our carers badly needed respite and surviving a traumatic situation.

If the hospice isn’t too far away, can they (their handyman) collect your own armchair to bring in or do you know a man with a van who could bring it in for you?

When you say you don’t get your meds, do you mean they don’t give them to you on time or they don’t have your meds in stock? I type up a list of times, med name, dose and method of giving each med and email it to the hospice before I arrive. I also bring it with me and the Doctor charts it up; if the meds are charted, they must be given. I also bring in a few days supply of meds in case they don’t have any in stock – my admission days are on weekends.

Yep, the manual wiping isn’t dignifying but I tell myself it’s just another bum to them! They are so used to it.

Do you mean when you say the “smart room” is occupied that there’s only one room with internet availability? Or is there more to it?
I would really struggle if my hospice didn’t have WiFi; it’s the only way I have to keep in contact with my family.

My BP & HR are always sky high on Day 1, then goes back to normal. I do not like going in but I think, as you do, that it’s important the family get a break.

Hope things can work out for you.
Love Ellie.

Ali_Chris
21st November 2016, 15:56
I hope it works out for you Terry and nothing is ever as bad as it seems at the time (ok sometimes it is ;) ) and maybe your working yourself up a bit? Try and look at the positive aspects of your stay. U get to see some new faces and a chance to dust off those old chat up lines that used to work before :)

And having ur bum wiped by a nice nurse may feel better than a machine and think how much you will appreciate home when its time to come home.

ccinjersey
21st November 2016, 16:13
Ali Chris is right Terry try to find the rainbow thru the clouds....as difficult as it can be.

and maybe when you come back home I'll be in the chicken shed to greet you with your golden egg and scrambled eggs ! I know how much you would like that lol

No worries Santababy things will work out try not to stress over it.

Love you :)
CCxoxo

mags55
21st November 2016, 16:20
Hi Terry
Sorry,that you are having problems with your stay in the hospice, I couldn't add any suggestions than what the others have said.
But I really hope you work things out.
Mags x

John14
21st November 2016, 17:45
Dear Terry,

It certainly seems that you have a significant dilemma over the issue of rest bite care, I wonder whether the hospice could have acted to improve their facilities following your previous visits as I'm sure that there must be others who require a riser recliner chair or access to a wash and dry toilet. Still the thing is that this is for your wife's benefit as well so lets hope that your stay has some other benefits, I quite understand why you are not keen.

I am finding it quite difficult to comment on the majority of threads here as they often refer to things which are as yet thankfully outside my direct experience, and yet I want to feel included but the price for inclusion on this particular forum is extremely high so far I have been sitting in the cheap seats.

I hope that you will be able to keep in touch and that your stay in the hospice will be as good as it can be.

Cheers,

John

Barry52
21st November 2016, 20:44
John,

No one on this forum is in the cheap seats, whatever stage of the disease and I include carers, partners and friends. We all help each other, whether it be advice, moral support, empathy or even a joke. We are bound by a common goal and that is to make the most of every day for ourselves and our friends.

Like you, I hope that Terry can have a relaxing time in hospice and that his wife gets the respite she deserves. It would appear that the issues facing Terry are not insurmountable as they require practical solutions, many of which have been suggested but we all feel helpless as we are not present to intervene.

Terry

I hope you have a pleasant time in hospice and your anxiety subsides by tomorrow.

Barry

WendyWooG
21st November 2016, 21:03
Terry
Big hugs for Hospice, I hope you manage to find solutions for some of the problems.

Wendy xx

Terry
21st November 2016, 22:18
thanks for the idea's and support, folks;

this is not nice putting so much pressure on a marriage or is it a carer and a burden.

sorry guys.


love terry

Terry
21st November 2016, 22:22
Having a moan helps a little;

Some one said that Ellie and I never moan.

Wrong, Terry

Davetherave
21st November 2016, 23:06
Hi Terry

Sorry to hear about this, I hope things can be worked out.

Best wishes

Dave..

lorret
22nd November 2016, 06:41
Hi Terry, it sounds a really bad dilemma you and you wife are facing, I cannot believe that basic riser recliner chairs are few and far between . Maybe you could bring the problems you're having to the attention of local powers that be.
On the other hand you could always come stay in our chicken coop, but you would have to share a perch with George who wakes up about 5 am.
We got a brilliant care company to help care for dad in his own home, the same two male carers came so dad was more than happy and we were too. Lorret

MNDConnect
22nd November 2016, 11:34
Hi Terry,

I am so sorry to hear about the issues and concerns you have regarding your stay in the hospice. It's sad that your stay should be fraught with so many problems.
I think the other forum users have made some very good suggestions. I wondered if it would be helpful for me or another member of the Connect team to contact the hospice to discuss some of your concerns, particularly the issues with your medication. Are you able to tell us a little more about this problem? In addition you mentioned you had concerns regarding the carers at the hospice. Is it that they don't understand your needs?

With regards to your chair, as suggested by Ellie, would it be possible for this to be moved to the hospice? Is there room for it?

Look forward to hearing from you.
Kind regards
Ruth

Terry
22nd November 2016, 18:41
Hi Ruth;

Medication along with things like flushing the peg and cleaning it just can take so long to organize and get done. it does spreed out time so much sometimes. theres a new drug system now.

Carers are a long story and that's very complicated.

I have a chair but I don't know how good it will be as I have no time as i'm so busy trying to get things sorted for the next loo and shower time.

having different carers and none standard needs and equipment makes things incredibly hard when you can't talk or even point well.

i've now got a table that lowers itself with the weight of my hand. not too much of a problem you say untill it lands on my wheelchair controller sending it forward, i just managed to turn it off before it squashed my feet. but was then trapped under the table and banging my glass didn't attract any one. another problem to get sorted.

i am just a moaner, they are all very very small things that are so easy to sort out if you can talk or move well.

love terry

Terry
22nd November 2016, 19:08
Hi Lorret;

The rise and recline chair issue was bought up about four years ago. one person wanted to get rid of them. i thought against it with most of the ot's and nurses. they did get some new ones but all are too small for six foot people. I was on the committee for two or three years but had resign because it was feeling like a rubber stamp committee. I then campaigned for a larger chair, they got a special one for larger people. it is a single motor one and with four cushions at the back of me and under my legs it was ok for short periods.

so it has been just over two years now that i have not had a comfortable seat to sit on in the hospice so no where to get a nice relaxing foot massage or similar. mind you along with the chairs the volunteer and paid massaging people seamed to have gone.

i did have one chair for six days on my last rest bite that was wonderful.

it's a sore subject with me and best i just suffer for a few days and forget it.

love terry

WendyWooG
22nd November 2016, 19:49
Oh Terry
That's such a shame, I love my foot massages at hospice. I hope mnd connect can give them a bit of a push on your behalf. Everyone needs a little rant and let of steam, little things become big things with this illness especially when you can't get comfortable.
Xx

Terry
22nd November 2016, 20:05
i don't think that can't do much from there position, maybe the local mnda person can ask a few questions but it's so hard without jeopardizing my care even more.

love terry

mags55
22nd November 2016, 21:03
Hi Terry
I hope you have settled down in the hospice now, and things are easier for you than you expected.
Big hugs
Mags x

Ellie
22nd November 2016, 21:06
Terry,

Do they do a Care Plan on admission? (I'm sure they are required to) You should get your requirements documented so there's a record of them. I, for example, ask for my extension sets to be cleaned daily.

I include my flushes under my "Medications Schedule" so they're put on my Meds Chart and therefore must be given at a specified time and signed as given, just like meds.

Thinking of you sweetie,
Ellie xx.

ccinjersey
22nd November 2016, 22:24
Hi Terry

Can you or your wife request a one to one (1:1) ? an Aide that is there for you care specifically. Or a staff member that can be assigned to check on your needs every half hour or so to ensure your receiving quality care, and your specific needs, and requirements are being met.

I hope your stay will be a comfortable, once you settle in a little more.

Thinking of you.
CCxoxooo

GrannieAnnie
23rd November 2016, 01:44
Santa baby here is a little funny to help you on your way, true too. When my son was an angelic four year old we took some friends to the New Forest. On the way we stopped for ice creams. I asked the kids what they would like and to my horror angelic one said ' Arty Farty had a party and all the farts were there TuttiFrutti did a beauty and they all went out for air.' I'll have TuttiFrutti mum please.😱 Grandpa??!!! Happy days xx 😆

Nettie B
23rd November 2016, 09:05
Thinking of you Terry and hoping things will be better than you expect.
I well remember the communication problems and indignities! Trevor only had single days at the hospice so he didn't have all of the issues there that you anticipate, but when we had carers at home so that I could sleep then there were problems with some of them just not understanding him ... they were stranger's.
I hope you'll be able to focus on the good stuff and that your wife has a refreshing break. I'm sure you'll cheer up some of your fellow "residents" with your wonderful sense of humour!
I'm not good at praying but for you and your wife I will try.
Love to you both, Nettie

Terry
23rd November 2016, 10:23
Hi Nettie;

i'a afraid it is worse. i just give up. i have bought up the same points time and time again. i made an offical complant last time i was here and told that they would make every effort to get me on the loo before my carer came.

i am just not going to bother any more and let everything go over my head. i will need a rest today, that's a first for a long time.

unhappy santa but i do like your funnies

alfies mum
23rd November 2016, 10:38
Oh Terry I am so sorry that you are not getting the care you need and deserve.You are so supportive to every one here and I feel so sad that you are so down at present.I am sending you a Big Hug

GrannieAnnie
23rd November 2016, 13:01
Santa baby. A big hug to try to make up for the miserable time you are having. Hugs. Ann xx

ccinjersey
23rd November 2016, 13:57
Terry you need a patient advocate or the patient representative, do you have staff members there that do that ? if not, what about the supervisor ? Official complaints should not be ignored. Can Mnda get involved, and contact them on your behalf and make sure you needs are being met?

Most upsetting you went there for rest, and that's what you should be able to do, and not have to be distressed, and worried over your care. Do try to rest and relax as best you can.

So sorry to hear this. If you like PM me their phone # I will speak with manager/supervisor on your behalf.

Sending you big hugs and kissesXOXOXO
CC

squash boy
23rd November 2016, 17:53
Hi Terry
I haven't posted much on the forum at this stage but I have followed everyone elses postings.It is clear from your own postings what a supportive and caring person you are and obviously very much admired by the others on the forum. Although we might be total strangers it makes me sad to hear how much you are struggling at the moment.I hope you get through it better than you envisage. I believe eveyone on this forum needs 'Happy Santa' back
Wishing you all the very best
Squash Boy

ccinjersey
23rd November 2016, 18:19
That's very well said Squash Boy. Terry is good friend and supports us all, all the time.

He deserves better, and I hope Mnda will step in on his behalf to ensure his week stay is as comfortable. and pleasant as it can be.

xox

Terry
23rd November 2016, 19:26
thank you all;

love terry

Ali_Chris
23rd November 2016, 19:30
I do feel so sorry for you Terry if I could do anything to help I would bless you Love Ali ps thinking of you xxx

Nettie B
25th November 2016, 23:59
Just in case you're able to link in to us at the moment Terry, I'm thinking of you and so would Trevor be if he could, bless him! You're a great guy and tirelessly help others on this forum. I'm sure I can speak for us all in hoping that there are some plusses at the moment. Maybe the odd stocking top to be glimpsed while beds are changed etc?
That's "Naughty Nettie" showing her colours!
Love X

Reta
26th November 2016, 08:08
Hi Terry I feel for you so much, I understand just what you mean with timings and care. After the first night my husband was in I stayed and did everything for him. Understandably he was upset as they put him in a bed which he couldn't get out of on his own. No one realised until I stayed the buzzer was faulty it only rung once or twice and then switched off. They all thought someone else had attended then. After that I just stayed and continued to care the same as at home. I did his feeds and toiletries, I washed him and did his meds and flushed his peg. If Bill required the toilet I was there and I transferred him again he couldn't talk at the end or should I say be understood so my voice alone was required. Can your wife not stay? I know I'm glad that I did, although I still did the same amount of caring, but I had the nurse checking on me and bringing me coffee and toast and we had any necessary help at hand. I also had the lovely Ruth from MND connect phoning me to check. Perhaps your wife could look at doing the same or someone else alternating the stay with her. Not sure on the chair, whether you will be able to take that in as per infection risk. We couldn't get the okay for Bill's and it was only 2-3 weeks old. I'm certainly glad I had those days with Bill . I hope you sort it out love from Peta xxx

lorret
26th November 2016, 09:08
Hi Terry, hope you are being well looked after. Lorret

Graham
26th November 2016, 12:25
Hi Terry,

I see that you are in respite care and I fully understand the immense stress you must be under at this time.

Very few people understand how difficult life can be when you are bedridden with limited motor function and unable to talk.

Being unable to talk in a new environment with new carer is a lethal combination. By the time the carer understands your needs, the carer clocks off and you have to explain your care needs again somehow, because you can't talk or write.

Only the new carer on shift only works to earn money and the heart isn't in caring for you. That is when you realise that the next few hours are going to be hell. Time to batten down the hatches and suck it up.

That is when you need MNDA. Only the MNDA are not going to help you apart from a few warm words on the forum. A PR exercise.

It is just a matter of survival, Terry, for a few days. Get into your Rambo alto-ego.

Although your wife doesn't want carer in your home, it is now time to cross that Rubicon. You will have time to choose a carer that both your wife and you like. When you next go into respite care your personal assistant will join you and explain your care needs to the respite carer.

Love Graham

Terry
26th November 2016, 15:12
Hi Graham;

It's lovely to hear from you, I should have replied to your email by now, I've been meaning too. hope you are OKish.

"Being unable to talk in a new environment with new carer is a lethal combination. By the time the carer understands your needs, the carer clocks off and you have to explain your care needs again somehow, because you can't talk or write."

You've hit the nail on the head and sometimes that don't understand some of the common english written words.

An update later.

Love to you Graham as always.

WendyWooG
26th November 2016, 15:29
I know it won't work for this time but for the future could you get a couple of instruction sheets made up and laminated to keep with you.
One sheet with a timetable of what you need each day and when roughly. Another sheet with how to instructions for the bits they keep getting wrong.
I can imagine how horrible and frustrating it must be for you. Chin up I am sending you huge hugs to get you through xx
Wendy

Terry
26th November 2016, 15:57
Hi Reta;

The idea is that I'm in rest bite to give my wife a break.

I do know of many other that come in for rest bite and still get their other half in to wash etc them but that is quite selfish I think. So I try to leave her alone to live a little.

I can do a lot for myself if given a little help when I need it as things just ant and will never be in the right place here.

Sorry to hear about Bill's chair, it is quite crazy that they see that as a risk when you compare it to everything else that is in hospitals and hospices.

I did ask about that but have only just sat in the old recliner here for the first time an hour ago. It is OKish well maybe. Trouble is that my wife would have more hassle organizing that so it looks that I will try and put up with this.

Love Terry

Terry
26th November 2016, 16:07
Hi Wendy;

I've got Idiot guides,

1) for getting in to and out of a recliner chair
2) for going to bed
3) for getting up
4) for going to the poo
5) two pages for having a shower
6) for my button feeding tube (which I have to direct all the way as 90% of the people here have never seen used one
7) I sure I've forgotten some

Some don't read, some can't understand some common words. It is a bit better now as they have been told to read out loud so sometimes I can communicate with that and them if they are looking at me.

I do email the manager and she comes to see me most days, so things are improving.

Love Terry

WendyWooG
26th November 2016, 16:24
Glad things are improving a bit for you Terry, so frustrating that you have so many problems even when you have gone to all that trouble. Xx

Terry
26th November 2016, 16:26
Hospice update;

Mnda have offered twice to ring up the hospice and Cc has offered too, but I think that it might things worse as they are caring for me at the moment.

Things are getting brighter but it's so hard.

I have had two girls that know me well and are very nice helpful today. I have been trying to get them to iron my socks and pants., now harm in trying.

A lovely young girl that showered me last night and put me to bed, the only down side was she would not get in with me, we know each other from previous visits too.

So Nettie, I want a little more than a glimsps of stocking tops, LOL.

Been a bit tough the previous nights were very hard, people not understanding some written words. etc.

Have had a laugh today and done a few exercises and walked a bit. Hidden the cleaner broom and torchered the poosh cheif, no one else will have a go at him because he is quite short with people but he is used to me scoring him and asking if there's anything edable on the menu. The food here is good but I know the cheifs and always have a go.

Feet are hurting as they swell so much in here. Sitting in a recliner now for first time, it is not great but I can use the laptop easier and have my feet free.

So I have a laugh as well with some of the longer serving people here that I know, and other new or ajencey workers. They like a bit of life and can't believe some of the things I say or just show them on my Lightwritter.

Am pooing OK now and sleeping Okish which is great.

Love Terry

Terry
26th November 2016, 16:42
I popped into daycare yesterday hoping to see a couple of Mnd people I know but it was not their week.

There was an old gentle man there with throat cancer and could not speak much, I think worse than me.

I showed him my lightwriter and my tablet with Predictable on it and his eye's lit up. He later used both of them and he is going to get something. To be able to not struggle so much to communicate will be so good for him and his wife. I have given him my email so when I get out of here I can give him more options.

It is such a shame that this people are left without sensible early advice and help. I might contact the cancer group in the hospital and ask a few questions. Mind you I don't always have much sympathy for them as I see some of them still smoking after being diagnosed.

Most of us have done little to aid MND, in fact many of us have lived healthy good life's, eating the right things and excising etc.

I know some cancers happen to good healthy people too. But generally they do get a lot more help and assistance then us.

It is just nice to help people improve there quality of life, who ever and what ever they have.

Love Terry

Have to go, got to get up off this chair and have tea dinner or what ever, if some of you Mnd people with messed up emotions are crying over this you're not alone, still it has to happen.

ccinjersey
26th November 2016, 17:43
You're a great Santa Claus Santababy, as well as a thoughtful, and understanding husband because you gave your wife a gift that you knew she needed even thru all the difficulties it is causing you. She is a lucky woman, and your a special kind of man.

Much Love xoxoxo
CC

Terry
26th November 2016, 17:56
Cc;

I'm certainly not special and my wife is unlucky to be in this situation. Still we'll make the best of what we have.

Love Terry

PS:- I do look a bit like this now as i have let my beard grow for over six weeks, it is a bit dark though.

Ali_Chris
26th November 2016, 18:53
Hospice update;

A lovely young girl that showered me last night and put me to bed, the only down side was she would not get in with me, we know each other from previous visits too.

Love Terry

Things must be improving as your sense of humor is back. Your obviously not delivering the chat up lines right on predictable. See if you can download some better ones ;)

Terry
29th November 2016, 14:34
Hi Chris,

Two out of three ain't bad. But three out of three would be so much better.

Love Terry

Terry
29th November 2016, 14:41
I've been let out now, got my sentence reduced for good behavior.

Very swollen feet and ankles and sitting in Costa having coffee and food.

Can't wait to get in my chair and have a nice comfy seat. Also my bio bidet will soon be in use.

Love Terry

ccinjersey
29th November 2016, 15:25
Yay!

I was worried your 3 out 3 might have kept you on the naughty list Santa, so well done on your early release.

Hope you, and your wife were both able to have a little rest, and happy for you that you’ll be enjoying all the comforts of home again.

xox

Terry
29th November 2016, 16:15
Yes Cc;

Just home and have done in ten minutes by myself, what would have took over an hour in the hospice with a nurse and am sitting in my chair with everything around me.

Shear bliss.

Love Terry

ccinjersey
29th November 2016, 17:22
Yay Yay :)

There really is no place like home Terry. Enjoy the bliss :)

CCxox

p.s working 9a to 9p today so your King can breathe a sigh of relief...

lorret
29th November 2016, 18:52
Terry, we are all happy to have the old you back. Lorret

Ali_Chris
29th November 2016, 21:05
Glad your back home Terry x

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