Still feeling totally inadequate

[AnneandChris]

Despite both the chest infection and UTI having apparently cleared up we're still having problems. Ten days ago we ended up in A&E as Chris developed problems with the catheter, which was remedied without being admitted and has now been removed. However he is virtually immobile and is now using a wheelchair indoors.

He is booked into a local nursing home next week for respite and whilst he's in his bedroom will be revamped with a hospital bed being installed. We'll have to review our care arrangements as I'm physically not able to heave him around at bedtime.

But, the good news is the District Nurses are superb and because one has previous experience of PSP knows her way round the various systems.

NHS has been wonderful - I had to call 111 last night and a paramedic soon arrived. Chris was having difficulty breathing and had probably aspirated. The paramedic arranged for the on call doc to call this morning, by which time Chris was breathing normally. So we again managed to keep him home.

Who knows what the future holds but we'll keep on keeping on

[Dadshelper]

Since you can't lift him and it appears you are getting a hospital bed, you may as well try for a lift device also. Couple different types depending on your needs, wheeled or ceiling mount tracks. It never hurts to ask, most they can do is say no...

Ron

[doglington]

We had the palliative care team from our hospice as I was unable to move him. They were always available and gave me a great sense of security.

Jean xx

[Marie_14]

You are doing very well. If Chris has had his catheter removed are you now using convenes? They are very good and saved me from going mad! Plus he is less Iikely to get a UTI. Does he know he is getting a new bed? If not I think you should tell him. He might get a shock otherwise.

Unfortunately, everytime anytime happens they take a step down. That appears to be what has happened to Chris. I am sad for you both and all the others on the site trying to do their best.

You are so lucky to have a nurse who knows about PSP. You shouldn't be moving Chris on your own. Ask her about this. What you need and should have are two carers four times a day. They should get him out of bed and wash him and take him to the toilet during the day. At night they should put him to bed and give him a wash. They should put his convene on if he has any. If he doesn't he will get a sore bottom and then pressure sores too.

From what you said he doesn't appear to be able to move anymore so if you give his legs a massage that will help him. As will NOT lying down flat! Less likely to aspirate. Although it can happen sitting up. I know from experience!

Fingers crossed that all goes well for you.

Marie x x

[Karynleitner in reply to Marie_14]

Marie, your information was also helpful to me. Thank you. I have been considering convenes and you have convinced me to give it a try. I just hope my husband does not try to pull it off. 👍🏽

[Marie_14 in reply to Karynleitner]

Karyn

You can but try? I was worried at first but I ended up being able to put them on when some if the carers couldn't! You can get a night bag and a day bag which is really handy. Hubby didn't want the day one at first but I convinced him to try it at home and see what he thought. It worked, so then he was happy to use it going to hospital appointments which was a relief. Good luck and if you need to ask any questions feel free. There are others who have used them too.

Marie x x

[Karynleitner in reply to Marie_14]

Thanks again Marie. I have minimal help from caregivers so I will doing it myself, but it may be eSier then dealing with the incontinence products. We have a nurse stop by once a month. She has suggested trying them and I am going to finally agress to her showing me.

Dan is struggling with pressure sores. I recently bought him a mattress that has alternating pressure and true air loss. It will be delivered next week and I was to,d it would work better without the large array of Incontinence products we use.

Your message struck me when you mentioned that laying in the wet just adds to the sores. He is usually drenched in the morning.

[Marie_14 in reply to Marie_14]

Karyn ask for a spray to help remove it as it can be quite difficult but not with the spray!! Easy then. You can also get something to help keep it on! He is unlikely to take it off. G was fine with them until near the end when he seemed to think he needed to remove them! Good luck, and if we can help let us know?

Marie x x

[AnneandChris]

Dear Jean and Marie, thank you so much for your kind comments, I suspect you are both on t'other side of the pond.

It's now 2:15 am and he's made his way into the family bathroom where he's fallen forward over the side of the bath. Fortunately there are several grab rails there so he's managed to pull himself up.

So I'm killing time whilst I wait for him to do what he wants to do.

Life is a rollercoaster at the moment.

Hugs to you both

Anne

[Marie_14 in reply to AnneandChris]

Anne I am in the UK as is Jean. Not sure which side of the pond you are on? 😊

Marie x x

[AnneandChris in reply to Marie_14]

Glorious Gloucestershire!

I had assumed, wrongly because of the time you responded, that you were in the States!

That'll teach me!

A x

[Marie_14 in reply to AnneandChris]

Gosh I love it there! You are so lucky to live there even if everything else has gone pear shaped?

I am a night owl but have to admit I didn't know it was that late last night!

Take care Anne.

Marie x

[Karynleitner]

Bless you Anne. It sure is tough. Some days it seems just too overwhelming . Best of luck.

[raincitygirl]

Wish I was there to give you a big hug, Anne. You sound like you're handling things really well though. Hope you're able to get some sleep and do something to relieve the stress? Get away for a massage or something now and then?

Anne G.

[AnneandChris in reply to raincitygirl]

Anne, your always so supportive, thank you.

A

[Suebatt]

Hi Anne and Chris

Sorry to hear bout the rough time at the moment and hope things can get back as normal as can be

Your post reminds me times that I had with Archie

you use your voice for getting urgent help I stopped Archie going into hospital last year and said he needed to be treated at home

We had regular weekly visits from community Matron and 2 visits a month from dr Everything worked well as we had emergency meds if he started not feeling well I also bought thermometer an oximeter and blood pressure monitor and urine dips

So I always knew when he was brewing something and it saved us endless visits to hospital

I hope you can get sorted

Hugs

Sue xx

[AnneandChris]

Dear Sue

This is what the paramedic wanted, but by the time the doc arrived he was better. I shall talk to my GP about emergency meds and kit.

Thank you for your kind support.

Hugs Anne

[AJK2001]

Hi

Have you tried a bed management system to help you move Chris? My Mum had to have 2 carers in at bedtime to get her in a good position, then the OT did an assessment and got her the hospital bed and the bed management system and now one carer can manage her again. The "system" is basically two sheets which go under your normal bedding, they have a slippery centre part so you can move the person lying on top of them, then you tuck one sheet under to "lock" it in position, so the person doesn't continue to slide ( that was my main worry that the carers wouldn't "lock" it properly but it's been fine). The OT prescribed us 2 sets, so even it there is an "accident" at night it's not a panic trying to get everything wash & dried in a day. I was worried Mum wouldn't like it, she was quite reluctant about the whole hospital bed idea but she hasn't muttered a word about it, which I take as a very positive outcome as she's not slow in letting me know if things aren't to her liking (quite rightly so).

Good luck with it all and get some rest yourself whilst he is in respite.

Alison

[AnneandChris in reply to AJK2001]

Thank you Alison

Yes, two sets of sheets have been ordered to come with the bed. I have experience of them when my Mother was in end of life care from September to February.

I will have to review the care for Chris as it is increasingly obvious that I need help at Bedtime and it may be that we will have to have 2 per visit.

All things to be arranged next week.

Thank you for your helpful advice.

Hugs

Anne