hubby - speech - fluid retention

[kay1]

not much of a title but major heart break at the moment. His voice is weaker and weaker and he tries so hard to convey message to me. Can the fluid retention be put right or is the PSP having a last laugh at the medics who keep changing catheters, and trying ways to clear blockages. I did understand the word "want to come home" but have been told he will have to go into nursing care - just feel as though i have completely abandoned him.

[hmfsli]

Kay, my thoughts and prayers are with you.

[Hidden]

Poor you. My husbands speech is getting worse and it's heartbreaking isn't it not being able to be understood. We used to joke about him being such a chatterbox before this gastly illness.

[Kathy]

Hi Kay,

Sorry to hear you are still having problems. In theory fluid retention should be able to be managed medically with diuretics and fluid restriction. There are alternatives to residential nursing care. I beleive there is a service known as Hospice at home. I would ask to be referred to the palliative care team, so you can explore all your options. You certainly havn't abandoned him.

Please kepp us posted

Lots of love

Kathy x

[kay1 in reply to Kathy]

Kathy, thank you for info, I will certainly take up your suggestions and find out as much as I can. The website is such a blessing. x

[SuzieQ]

Hi Kay

Try and stay positive. It seems we go from one crisis to another with this horrible disease. I care for my hubby and we are just getting over yet another chest infection. We haven't reached the stage you are at yet, but I know it will come. You are in my thoughts and prayers. Take care xxxx

[kay1]

just getting ready to visit, afternoons he is at his worse in discomfort and agitation, evening visitors arrive and he is much calmer, he also looks so well which belies his condition. I thought we had got away with the progressive bit, for three years hardly any change, but the last fall was one too many. He still manages a smile and a great big hug for the great grandson. x

[Kathy]

Hi Kay,

Strangely enough Mum also seems more agitated and restless in the afternoon, usually between 4 and 6pm. She also seems to focus more and "make an effort" to talk to other, more "occasional" visitors. Almost as if she doesn't want them to see her at her worst. Where are you based?

Kathy x

[Kathy]

Dear Kay,

I've been thinking about you and your husband and just re-read your original post where you mention changing catheters and clearing blockages and I fear I may have misinformed you

Fluid retention is the condition that can be managed with diuretics and fluid restriction and the signs of fluid retention is puffy swelling of the hands and feet. Urinary retention (which I now suspect is what you are talking about) is an entirely different condition in which the person has trouble emptying their bladder. If the medics have tried bladder washouts and changing the catheter ask them to consider a supra-pubic catheter which requires a small surgical procedure to insert a permanent catheter directly into the bladder. It tends to be a slightly wider bore tube than a normal catheter inserted via the penis and therefore less prone to blockages. It also bypasses any internal narrowing of the "pipework" leading from the bladder. If your husband is retaining urine this could account for his sudden deterioration, pain and agitation. Imagine having the feeling of desperately needing to pee but being unable to all day, every day! It also causes a build up of the normal toxins that are secreted in the urine, which will make him feel quite poorly. It may be that if they can sort this out he will pick up a bit and you would be able to manage him at home.

Hope this helps and I didn't cause too much upset or confusion with my earlier post.

I still think it would be worth asking for a referral to the palliative care team for advice on future management.

Much love

Kathy x

[kay1]

Hi Kathy. you have so much useful information, and you are right about the urinary retention, a bladder washout and told a larger catheter was inserted yesterday and i think he is peeing for England at the moment, i was told it bypassed the prostate, so maybe it is the one you mention. Came home from hospital this evening and thought PSP stood for Peaceful Serene Person, so pleased. One day at a time!

I am Hemel Hempstead based.

love Kay

[hmfsli in reply to kay1]

Kay,

That sounds a little more like good news. Please keep us posted.

hmfsli

[Kathy in reply to kay1]

Hurrah!!! SO pleased they finally seem to be getting on top of this Hope it won't be long before he is home where he belongs! Have you thought about attending the PSP symposium in London in September?

[ray-wiffen-1958 in reply to Kathy]

hi kathy

glad everything seems to be getting better for you

i have all ready booked my place at the psp symposium

in london and looking forward to meeting every one

just got to book my train tickets x

[Kathy in reply to ray-wiffen-1958]

Hi Ray,

See you there!!! We will have to try and say "hi" face to face

[kay1]

x

[Louise-Alabaster]

Hi Kay - we insisted dad didnt go into care and we were able to arrange a 24 hour carer to live at home - it meant he always had his family around him and slept in his own bedroom - its not easy as we also had nurses in all day long changing him/giving him meds and feed but at least he stayed at home. Its an easy option for them to put him in care - in the end we had a really good District Nurse who arranged the 24 hour carer. Please ask about it x

[kay1]

Thank you ladies, this is one place to get morale boosting help and good advice, you have offered me more options than i knew about for which I am grateful.

x

[Kathy in reply to kay1]

Any time xxxx Keep us posted!

[Louise-Alabaster]

Hi Kay - I am not that far from you - I live in Hertfordshire as well - so if you need any help with anything just let me know xx

[kay1]

Thank you, And Kathy, the pubic catheter was suggested but it seems it will be the last resort, different procedures for the last two days work but only temporary, Each day a guessing game

[Kathy in reply to kay1]

Oh dear sorry to hear that! Will keep fingers crossed for a more "permanent" solution x

HUGS for you and hubby!!!

Take care of yourself!!!!

[Kathy]

Hi Kay,

How are things progressing? Any news about hubby coming home yet? Keep thinking about you

love Kathy x

[kay1]

hi Kathy, urology to see hubby this morning, medically he is "fine" just the catheter still to be sorted. He has started having mood swings and ramblings, he has not left his bed there for three weeks now, the

voice is weaker and more and more difficult to understand. Physio have ruled out trying to get him out of bed because of the balance, but he tries desperately to climb over the safety bars on the bed. He is 89 this month, and the only thing he seems to know is that he is not home. x

[Kathy]

Hi Kay,

Glad hubby is finally seeing a specialist, hope they can come up with something useful.

Mum went into respite for a while last year and became completely disoriented and confused, her speech and swallowing deteriorated dramatically - to the point where she had to have thickened fluids - and she became doubly incontinent for a while. As soon as she came home the swallowing, speech and incontinence improved almost overnight. She now has only occasional "accidents" and doesn't need thickener in her drinks. It's incredible the impact of being out of their normal routine and surroundings can have. I hope this is the case for your husband too, and that when you get him home he will "pick up" a bit.

Please keep me posted, you are both often in my thoughts.

Love

Kathy x