Dehydration: what are our options?

[Nutty Nan]

I am caring for my husband at home. He has been deteriorating at an alarming rate since a UTI in February this year. A week ago he lost the ability to stand (aided) for short periods for personal care, and is now being hoisted. He has been holding (storing) food and fluids in his mouth for several weeks, but now his swallowing reflex is letting him down almost all the time. District nurses have advised thickened liquids and liquidised food: from my point of view (selfish??), the last bits of enjoyment lost for him, and also for me, as I regard the giving/sharing of tasty food a major part of 'caring'.
Sadly, he is only able to swallow very little, and we have been offered a 'swallowing assessment' next Tuesday.

So, with my thoughts and emotions in turmoil, I now face the tough realisation that dehydration is imminent unless we experience a huge miracle.

While I wait anxiously for our Tuesday assessment, does anyone have any experience or advice? Are there suitable alternatives to drips and peg feeding? Is hospitalisation inevitable? I desperately want to do something NOW to help him. Any tips??

I want to be strong, but I am so tired and scared - - -

 

[Grannie G]

Hello Nan.

I`m not able to give any advice about dehydration as it`s out of my experience. But I wanted to say how sorry I am you and your husband are having such an upsetting time.

I hope someone will be able to help you, but it may not be till tomorrow, as it`s late now.

We did have a Thread about this problem. If I can find it I`ll post the link.

Love xx

 

[jenniferpa]

The only other thing that might be suggested is subcutaneous fluids. I'm not sure what my opinion is about them: it's not painful but nor do I think it's terribly effective. They tried this with my mother shortly before she died (and I've done it myself with a dog with kidney failure) and neither had a happy outcome. On the other hand, it can be done "in home", which is a plus point.

 

[Tender Face]

PM on way ... mum had 'swallow test' this week .....

With love, Karen, x

 

[CassElle]

Hi Nan

My situation is almost a mirror image of yours except I am caring for my mum.I have cared for her for almost five years. During that time she has had UTI's (lost count of how many) and chest infections. She has deteriorated steadily until March when another 2 UTI's and a chest infection affected her exactly the way your dear husband has been affected.

I know exactly how are feeling with regards to his feeding. Mum
has always loved her food - its always been one of her few pleasures. I feed her and to watch her sitting with a mouthful of blended food and looking at me as much as to say what do I do with this!

I blend all her food to yoghurt consistency and that seems to help a little. Tiny sips of water with the food does too but with great care. I get her to put her chin down towards her chest when she swallows - particularly liquid. This helps to minimize the risk of it going down the "wrong hole".

Despite the above attempts I like you am very concerned. I have been given some food supplement drinks by the district nurse but if she cant swallow then these wont go easily.

I would be interested to know more about the swallowing test. I havent heard of it.

Thinking of you

Casselle

 

[Skye]

Hi Nan and Casselle

John is at a similar stage, following repeated infections. He is still managing to swallow, but frequently chokes, and I feel it won't be long before he is put onto pureed food.

But Nan, that needn't spoil his and your pleasure in food. In John's home, they puree each item separately, and keep them separate on the plate. Much more work for you, of course, but worth it to maintain flavour and variety.

Likewise with drinks and soup. They get exactly the same juices, but thickened with Thick and Easy. Sometimes this is given on a spoon even, but they are getting their liquids.

They do tend to put people onto pureed food as soon as there are regular problems, particularly if the person suffers from repeated infections. The danger is aspiration pneumonia if the food goes down the wrong way.

 

[germain]

Hello all,

Just a quickie !

I found Mum was far les likely to choke if she took her fluids with a large straw. Possibly it was to do with the fact that you have to lower your head to use a straw (position previously mentioned)

We got a very large toddlers fancy cup with a lid and with a built in straw ( from a pound shop )
- stopped her amusement at tipping everything upside down tho' !


regards
Germain

ps she had a drip in hospital because of dehydration and we gave permission for her arm to be restrained each night - she constantly pulled out the needle - just couldn't leave it alone for 5 mins. ! Drip worked within 36 hours.

 

[Nutty Nan]

Thank you, Gang!

I suspected that the problem with swallowing is not an unusual one, but hadn't come up with any solutions when I did a 'search'. Thank you for all your comments. The more information I can gather before the assessment on Tuesday, the easier (?) it will be to make a decision, providing, of course, that there is any choice in what is to be done.

Hubby wasn't too bad today, but took less than 500 ml of fluids throughout the day, and very little food, most offerings just remained in his mouth. It's a case of repeated attempts, some you win, some you loose.

I know we are heading for the inevitable, but 'someone' seems to have stepped on the accelerator and I wish I could pull the handbrake on. On the other hand - - - it is a no-win situation, I dread the thought of helpless, vegetative lingering as witnessed in the harrowing documentary of Malcolm and Barbara. But I am not ready to throw in the towel, either

I will let you about the assessment after Tuesday.

 

[rhallacroz]

Dear Friend
Dont give up my dad was just like that a few months ago he lost 2 stone and I thought this is it. He had a chest infection and was going down hill rapidly. Then all of a sudden I found that he would take the supplementary drinks I think it was ensure plus the juice. This boosted his weight there were times when he wouldn;t swallow or didn;t know what to do this phase lasted for a few weeks. Then suddenly he started to eat but couldn;t feed himself we used to leave a plate fo finger food by him which if we fed him it he wouldn;t know what to do.
If he could smell the flavour this seemed to tempt him I remember at one point he wouldn;t eat or drink unless we wheeled him to the pub then he would take a drink with you especially if you said cheers dad . He seemed to remember what to do. The action must have triggered his memory.
So what I am saying is dont give up keep trying
\\lovr \angela xx

 

[lesmisralbles]

Hello Germain

Quote : found Mum was far les likely to choke if she took her fluids with a large straw. Possibly it was to do with the fact that you have to lower your head to use a straw (position previously mentioned)

We got a very large toddlers fancy cup with a lid and with a built in straw ( from a pound shop )
- stopped her amusement at tipping everything upside down tho' !

Yes, it worked for Ron the cup with the lid and the very large straw. I got mine for a pound
And if he jerk's, nothing goes on him. (Ron has Parkinson's and Lewy bodies) Ron's head is lower, toward's his chest, that is the Parkinson's. Whatever we can get to help
Barb XX

 

[Nutty Nan]

Head up, boxing gloves back on!

Just to let you all know: the swallowing assessment yesterday consisted of a simple demonstration of how well (or otherwise) my husband dealt with a drink that was offered. I was chuffed that he did so well, but in hindsight, it might have been more useful if the lady from the SALT (Speech and Language Therapy)Team had seen him a couple of hours later, when we spent well over an hour over dinner before we had a tiny little bit of success.
It turned out to be a useful meeting, I was offered lots of advice on nutrition, a referral is being made for a dietician, a suggestion that we should ask for a blood test to assess how well his body is processing nutrition (another thing that can break down in the more advanced stages of AD), this could possibly be addressed with the use of supplements.

I think with the help of the thickened liquids we have already achieved an improvement in his dehydration and general well-being, and when I asked about PEG feeding I was told that although the initial procedure would obviously have to be carried out in hospital, there was no reason why my husband could then not come back home again. In fact, PEG feeding can be carried out as necessary, in tandem with ordinary food.

I feel so much more positive again. My new challenge is to adjust my shopping and cooking habits to include the soft diet requirements, I 'push' drinks whenever possible, and I keep my fingers crossed that the new regime will serve us for as long as possible.

Once again: thanks for all your input. It helps such a lot!

 

[Tender Face]

Head up, boxing gloves back on!

That's the spirit!!!!!!

Well done, love Karen, x

 

[Margaret W]

This might be stupid and irrelevant, but I am not suffering from anything that I know of, but recently I have had absolutely no appetite on occasions. It did start to worry me, and I have decided that for best effect, food needs to be in moderation, no large portions, and visually attractive, several colours, fairly moist (gravy or sauce) and with contrasting textures, eg. soft, crunchy (salads), solid (baked potato), moist (e.g. gravy or sauce). The food also needs to be of good quality, e.g. slightly overdone is not acceptable. Quite a turn-off. So careful preparation is vital.

I have an article from an old-fashioned journal about "foods for invalids" and it suggests that presentation is the key. "A tray with a tray cloth, shiny cutlery, a sparkling plate, a clean napkin, a good wine glass, in other words, presenting the meal as "an event". It helps me to use this approach. Hope it helps others.

Regards

Margaret

 

[Margarita]

I have seen the side effect of my mother becoming dehydrated few years back that she was very weak , was bring up her food every time she ate something , could not retain any food, other times vomiting a lot of yellow liquids also very usable on her feet that she had a fall & was taken to hospital, then they told me it was due to dehydration

I never relished the imprecation of what could happen when someone became dehydrated . I was giving mum drinks but she was just forgetting to drink it , sometime just did not want water.

( My mother could be in a different stage as your husband as I don't want to give you false hope )

when mum got home I also tried all the tricks in the book to get her to eat . she could keep down, soup mash potatoes. slowly after while she pick up . now is back to eating normal & does not seem so confused as she was back then

 

[Nutty Nan]

Margaret and Margarita, you are both right.
As my husband is past recognising food and drink, it is entirely up to myself and anyone else who is with him during the day to givehim drinks, rather than just offering them. It seems that as he has been re-hydrating, the swallowing has improved, as has his appetite. (Undoubtedly, the thickened liquids are easier for him to swallow - something I had to witness before I believed it!)
Because he hardly communicates now, it is difficult to guess at his every need, but I think we have learnt a lesson and are making a special effort now by keeping a list of all his drinks and food throughout the day. This serves as a simple prompt if we fail to keep the fluids up.
The other aspect is that I have to address my shopping and cooking habits to cater for his soft food needs. Not easy, but definitely a must.

 

[Margarita]

Because he hardly communicates now, it is difficult to guess at his every need, but I think we have learnt a lesson and are making a special effort now by keeping a list of all his drinks and food throughout the day

Even thought my mother mobility is somewhat good still. My mother will or cannot communicate her needs to me as she rather just sleep nap in her chair all day when she is at with me when not at day centre like today.

I think it’s a good idea about keeping a note on the fluids in take I am going to do that to day thanks for that tip

I do try prompt my mother while she napping on the chair to talk to me while offering her water, but she just says leave it they, does not want to talk only saying can I lay in my bed.

Am pleased for you that your husband taking in more fluids, as i know how distressing it is to us to see someone we love like that