Any idea what’s going on?

[Sarah1972]

Mums been in Hospital now for just over two weeks, on NBM due to her choking. She has had the runs for over a week (think due to her feed and antibiotics) last night was awful. She was very confused but didn’t have a temp. She couldn’t settle, kept trying to get out of bed, calling for her granddaughter. Her urine was very dark yesterday though they have just changed her bag and its looking a lot lighter today. Her speech is mumbled and although much better than last night she still isn’t right today. From yesterday morning she was doing really well for the majority of the day. Any idea what is going on?

[kenh1]

I wouldn't worry about the urine. My wife's catheter bag is a horrible colour in the morning but when the new bag is connected it comes through nice and clear. It has been like this for over five years now, nothing to worry about.

[honjen43]

Two thoughts. Does she have an infection that is maybe not showing up? Is she getting enough fluid?

Dark urine can indicate insufficient fluid and since she is NBM may not be getting sufficient fluid through tube feeding.

Confusion can be associated with infection if not the norm.

I would ask for both these to be checked.

What a difficult time for you both. You are doing your best! I know how frustrating hospital stays can be. I found that period exhausting, not being able to communicate with your loved one, alongside variation in attitude and understanding of staff!

Hope you find answers soon. Don't give up!

Kia kaha! Stay strong!

Big hug

Jen xxx

[Sarah1972 in reply to honjen43]

Thanks Jen, just waiting for consultant to come round so will speak to them. It’s horrid as although some nurses are wonderful no one understands the condition which is frustrating. I’m going to ask for the neurologist to see mum (asked already but no joy) though even he has little experience of PSP. So frustrating when you know more than the medical persons xxx

[honjen43 in reply to Sarah1972]

Have just read your previous post. I wonder if your mum is afraid of what is just around the corner. She has progressed so quickly to this point, and you won't want to define where that point is either.

You ask yourself how long can your mum go on. Is she perhaps thinking the same - and not sure whether you understand? Time may be running out for her!

The doctor sounds rather uncaring! Have you spoken to Hospice or someone who understands end of life care? Your mum needs to be in caring surroundings where she is relaxed and has understanding people about her.

You have talked about getting your mum back home. It is perhaps the time now to try and make this happen fairly quickly with the Hospice help?

Hope you get other answers from your doctor. However, be prepared for things to be beyond his control.

It has all happened so quickly, but no-one is ever prepared!

Big, big hug! Hope this is not so for a little longer.

Jen xxx

[Sarah1972 in reply to honjen43]

This is very true Jen and she has said in two occasions now that she is worried about leaving us behind. This morning she even wanted me to lean over her so she could smell me. I’ve spoken to palliative and they were going to speak to all concerned but that was either a week ago. She was so happy yesterday as we told the consultant she didn’t want the PEG. He said that she could start drinking fluids to see if she could consume enough to keep hydrated. She was so pleased as it looked like we were getting somewhere however the nurse decided she couldn’t because of the dangers. Our plan was that as soon as she is discharged that we go to London to see a west end show, and the champagne bar at harrods. She then wants all the family round for a big get together and meal. I just worry this is getting further away. The staff seem to think because she can still walk that she is doing really well. What they don’t notice or understand is I have to guide her frame so she doesn’t fall. She is double incontinent, speech is up and down to point that I don’t have a clue what she is saying, she is choking on her saliva, her eyes are dry and itchy (still waiting for drops) she can’t get comfy in bed, she can not move herself so needs double assistance to help her. She clearly is deteriorating. I even had one of the carers who looks after her on a night tell me she should have the peg. She seems to think it is quite acceptable that she once had a client who was bed bound for 3 years yet they could use the hoist to sit him in his chair. 3 years, it’s awful and unkind. I can not and will not let that happen to my mum xxx

[Sarah1972]

Fingers crossed it’s the same for mum though very dark yesterday. She did have 8 trips to the toilet, fingers crossed it’s a one off x

[Hidden]

If she isn’t drinking it could be dehydration. That could produce dark urine and confusion. I would imagine she is on an IV drip of fluids now.

[Sarah1972 in reply to Hidden]

Yes she had a drip fitted yesterday, think she should have had it earlier though x

[Suebatt]

Hi Sarah1972

I know the frustration well about hospitals having no idea Archie had a peg fitted last year and it did help him as he got less and less pneumonia otherwise he wouldn’t of lasted as long as he did

When he had it fitted his speech you could understand most of what he said then he could walk still with Zimmer frame he did get a few infections but treated at home with emergency meds.Unfortunately he had a bad infection and ended up in hospital and from that it was downhill with things which this crappy illness does

Basically the peg did help him and he didn’t like it always asking for tatties and mince

His urine was always up and down and half the time it was infection

What u need is to get the psp Manuel and take it in with you cause I always told them to read it cause they know naff all about it

If your not happy get the Ward sister and tell her if no joy go to Matron and if that fails take your complaint to pals

I hope that your mum gets sorted and you and your family get some answers

Thinking of you

Sue x

[Sarah1972 in reply to Suebatt]

Sue it’s so good we have this site, it’s like people on here are the only ones that understand. I have just called the palliative care team and they have no record of her. I referred her over a week ago. It just feels like we are constantly banging our heads against a brick wall. I’m trying to stay level headed so I can do everything that needs to be done. I’m sure they all feel I’m exaggerating the condition. Xxx

[Suebatt in reply to Sarah1972]

Hi Sarah

Unfortunately I think the pros are all knobheads again stick to your guns and I know it’s hard but fight your corner love write down things that you want to remember so you can refer to it another time

To me the people with the knowledge about this crappy illness is the carers

Have you a local hospice that could give advise they came on board with Archie 2 month before he passed and I couldn’t fault them at all

Somewhere along the line you have got the strength to get through this and your on the best site as somebody will pop up with help advice and most of all listen and understand

I truly hope you that you get what answers you need

Take care

Sue x

[Motts in reply to Sarah1972]

Good Morning Sarah

I agree this site is a gift. Plus, I cannot say enough kind words about Hospice.

I too believe it is a good idea to document each day (if you can find the time with all that is going on).

Remember to take care of yourself too. Sending Hugs - Granni B

[Marie_14 in reply to Sarah1972]

Sarah

Go to PALS and threaten them with the press as they are neglecting your Mum in this hospital! I have never heard of Palliative Care forgetting about a patient!! It is a total disgrace. You need to fight them all sadly.

Contact the Hospice too and see if you can get your Mum home? Can you get someone to sit with your Mum while you sort the lot of them out?

Wish I was near you I would help you. They are a disgrace in that hospital Sarah. Someone told you to make notes of what is happening which is an excellent idea.

Also make notes of questions you want and need to ask. Print the symptoms off for the doctor and another for the nurse! Since when has a nurse over ruled a doctor?

Hugs to you.

Marie x x

[Noella21]

Dear Sarah .You are a wonderful caring daughter. You are doing great all the right things. Keep going go with your gut. You are more ivested in your mother's care than any professionals. There comes a point when

being surounded by loving caring individuals who love you is all that matters. You sound like you already are doing this. Prolonging sufferrring for the sake of a little more time you have to question for who'a sake are we doing this . Is it hers , because doctors are able to ? I think you know in your heart the answer. Prayers for you and your family. We are also fast approaching this dilemma. This group is the best for support and sounding board for your thoughts but in the end you have to make the decisions. Whatever those are know we do not make judgements we are here to support you.

[Sarah1972 in reply to Noella21]

Thank you, it means a lot xxx

[Sarah1972]

We saw the consultant yesterday and it has been agreed that mum can come home. They are to put everything in place first, which shouldn’t take long as already have most equipment. They need to increase her care throughout the day also. Mum can then eat and drink what she likes. They have said that she will get a chest infection very quickly and that this will be her last illness. We are planning on a trip to London on Saturday, and the following weekend will be having an open house for friends and family to come and enjoy some time with mother. We will then take each day as it comes. The consultant has assured us that mum will never have to step foot in another hospital and everything will be managed from home.

[Spiralsparkle in reply to Sarah1972]

It seems wrong to write I am so pleased your Mum is finally allowed to go home and spend her time as she wishes as it is her journey to leave the earth.

You have been through hell and back this last two weeks but now it has turned into the outcome she wishes of going home.

The palliative care she receives will be so much better than a hospital environment.

Make many more memories together & enjoy the time she has left which may or may not be more than the hospital are expecting. Most people are better off at home but we cannot stop the inevitable once swallow function is compromised.

Hope all is put in place quickly.

What a relief that she doesn't have to go into a hospital again.

X

[Sarah1972 in reply to Spiralsparkle]

It’s strange because I am so happy for my mum, yet very sad she is leaving so soon but it is for the best. My job now is to ensure she gets to live the time she has and do all we can. Once this is over I’m sure it will hit me like a train. However I can’t change the outcome so for now I will get on with it and be her rock, just as she has been to me xx

[Spiralsparkle in reply to Sarah1972]

Will be thinking of you.

You are definitely her rock.

Take care of yourself too xxx

[Suebatt in reply to Sarah1972]

Hi Sarah

So pleased your mum is coming home to be back with her family

Hope they give standby meds for her as if you feel there might be a bit of infection brewing you could start them

Have a fantastic trip to London on Saturday

Hugs to you all

Sue x

[Sarah1972 in reply to Suebatt]

Interesting sue, I will ask xx

[Suebatt in reply to Sarah1972]

The reason I say that is because I stopped Archie going back into hospital from last September cause we looked after him better

We had a community Matron coming every week so it made it easier if needed them

Sue x

[Sarah1972 in reply to Suebatt]

Palliative care should be in touch today fingers crossed 🤞🏻

[Mamapiggle]

Hi Sarah you must feel very relieved that your mum is allowed home. What an amazing daughter you are she must be very proud of you. I hope you have a good time in London on Saturday. Take care

Jeanette xx

[Sarah1972 in reply to Mamapiggle]

Jeanette my mum is the amazing one, I have been so fortunate to have her all my life. She has taught me to love and respect. I agree that I am doing well by her but that is because I am the woman she has made me today xxx

[AJK2001]

Well done to you for battling through to get what is best for your Mum at this time. Hope the move back home goes smoothly and they don't put more obstacles in your way. Thinking of you.....

[mattnkatsmum1]

Sarah, I have nothing constructive to add as I am pretty new to this horrible journey but I will soon be in a similar situation with my own mum and my heart goes out to you. Many hugs. xxx

[Sarah1972 in reply to mattnkatsmum1]

So sorry to here about your mum, such a cruel illness. My advise to you is to stay with this site, the people here are amazing xxx

[margh2468]

Hi Sarah, I too am so thinking of you at this horrid time of your Mum's life. Leon (hubby) had a P.E.G. tube fitted 4th Feb 2017, he was in hospital 4 days later with extreme diarrohea (Spelling prob Wrong), was definitely not his normal self, at that stage he couldn't do anything for himself. He was rambling, continuos spikes in temp, clamy body, not responding to me on 3 occasions, when I though I was going to lose him. Could only talk via an alphabet board, so I know what you are saying about NO COMMUNICATION with hospital staff, unfortunately Dr's don't know enough about this dreaded illness P.S.P. The head nurse talked me into getting Leon into care, where he went for 2 weeks, unfortunately it was a disaster. I finally took him home again, where I was able to manage for another year. Then had to take him to a care home again, this time fortunately found a brilliant place where Leon spent his last 4 months in a comfortable, happy and friendly invironment. Although he could do nothing, he was included in activities, I went in daily for several hours a day, and then when he decided he had had enough, slept on the floor next to him for the last 10 days. You are doing a wonderful job caring for your Mum as you are. This site has been a godsend for me, as I am sure it is for most others too. Love and hugs going your way from Howlong N.S.W. Australia Marg xxoo

[Sarah1972]

Marg, what an horrific experience you and your husband had my heart goes out to you xxx

Mum should be coming home today and without the peg.

This site is amazing. You messaged me from Australia, the other side of the world yet your post is so personal that seems you are only next door. Love and hug back at you Marg, all the way from Suffolk, England xxoo