Illness or deterioration

[LyndaR]

Hi everyone . My husband was diagnosed Alzheimer’s almost 7 years ago, and I know his condition will deteriorate, but I’m struggling at moment to know when he’s ill or when it’s his condition.
The past week he has gone from confused, but relatively active. Always wanting to be out and about.
Can’t get enough cake and biscuits into him!
Now he has no energy, doesn’t want to eat, sleeps a lot, very unsteady walking.
Have been to doctors and they’re doing blood tests but how do you know when to panic that he’s very ill or is it just another stage. No one seems to be able to answer my question,
This illness is heartbreaking 💔

 

[Louise7]

Hi @LyndaR that's a tricky question to answer! My mum has Alzheimer's and unlike some other types of dementia the progression is, usually, gradual rather than sudden. When there has been a sudden change in mum's behaviour it has usually been due to something like an infection, another health/medical condition or change in medication rather than a sudden deterioration due to Alzheimer's, but it's something that the GP checks out to narrow down the possible causes. As your husband's sudden change in behaviour has coincided with a spell of hot weather it's possible that he may be suffering from dehydration or a urine infection so it's good that the GP is carrying out tests. I've found that with mum it's just a case of keeping an eye out for sudden changes and if in doubt speak to the GP to be on the safe side, but others may have different advice/ suggestions. Hope that your husband starts feeling better soon.

 

[LyndaR]

Thanks Louise. Urine infection been ruled out but having blood tests tomorrow.
He has started to eat a little more. Found soft foods are working and getting fluids into him.
I know he will never get better but hopefully an improvement soon.

 

[Kas 0103]

@LyndaR I have just been in touch with our doc today as my husband seems to have deteriorated over the last month or so, so hard to work out what’s what, isn’t it? I went through the PINCHME list and don’t think it’s any of those problems, but who knows? Feeling quite depressed tonight as he has had a poo incident, where he decided to go in the kitchen, I didn’t realise until I noticed the back of his trousers was dirty when he stood up from the chair, on which he had left a tell tale mark. I cleared everything up, went to help him out of his trousers and he flatly refused to take them off, holding onto my wrists so tightly they’ll be bruised in the morning! I said I’d run him a shower, but he refused to have one. He then continued to walk around leaving a small trail of poo everywhere he walked… I finally managed to get his trousers off so that he could go to bed, but he refused to let me wash him or clean him up, so he has gone to bed with dirty legs, but wearing incontinence pants! Oh the irony… I’ll just have to sort out the mess tomorrow, I guess. I’m so tired but I can’t sleep now!

 

[SeaSwallow]

Oh dear @Kas 0103 what an awful evening you have had and then to still have to deal with the aftermath.
I hope you got some sleep and sending you {{{{{{hugs}}}}}}

 

[LyndaR]

What an awful time for you Kas, I haven’t get had the poo incident but my husband now regularly wets himself and then there is usually a battle to get him changed and washed.
I put him in incontinence pants at night but he often takes them off.
It’s exhausting caring and sometimes difficult to keep your patience, even though you know it’s not their fault they have this cruel illnesss.

 

[Kas 0103]

Oh dear @Kas 0103 what an awful evening you have had and then to still have to deal with the aftermath.
I hope you got some sleep and sending you {{{{{{hugs}}}}}}

Thank you for your lovely, supportive message. I fell asleep eventually, had to get my husband up and ready early today as I’d stupidly made a Covid jab appt at nine! He woke up in a very amenable mood, thank goodness, I was able to strip the bed clothes to wash them and he had a shower quite happily and let me wash him properly, so that was an enormous relief! It felt like the end of the world last night - melodramatic, maybe, but I guess that’s what tiredness does…🙄

 

[Kas 0103]

What an awful time for you Kas, I haven’t get had the poo incident but my husband now regularly wets himself and then there is usually a battle to get him changed and washed.
I put him in incontinence pants at night but he often takes them off.
It’s exhausting caring and sometimes difficult to keep your patience, even though you know it’s not their fault they have this cruel illnesss.

Absolutely spot on! I know I’m really lucky that he goes to a day centre 9-3 once a week and I have care support for four hours once a week, but that still leaves quite a lot of hours to cope alone - and mostly I do, but sometimes I know I’m less patient than those videos you watch on YouTube about what you should do and how you should respond… And yes, mine takes the ‘special’ pants off too - I wish he’d use them rather than trying to use the bathroom then deciding to wee in the bedroom, he does use them when he’s asleep, it’s just if he wakes! Sometimes you can smile at the things that happen, other times you want to cry… x

 

[Dianej]

I suspect the recent hot weather may be something to do with changes in my husband's behaviour. He has become much more uncooperative, won't shower or even wash apart from his face. He lets me wash his hair over the washbasin, but that's it. Yesterday he had an appointment with the practice nurse because his ankles were swollen, and refused to wash his feet or let me do it before he attended. It was even a fight to get him there because he locked himself in the bathroom when it was time to go.
He has started refusing to go to bed because he says it's not his bed, and some nights I have had to leave him to sleep on the sofa. He wakes up at 4am when it's daylight and paces around the house and searches cupboards and drawers. He always did this, but now he's much more agitated.
He is also more verbally aggressive, both to me and strangers. He told a person we passed in the street that they were an a****ole, completely out of the blue, and was very rude and uncooperative to the practice nurse.
I asked her if the hot weather could affect Alzheimers and she said that she thought it could. She suggested he could be dehydrated. And there's a thing, he could be, but one of the new behaviours is that he won't drink. He would never drink water but he used to drink endless cups of tea, but now when I make him one, he drinks about an inch, and then, in a furtive way, goes to the bathroom and tips it out and washes up the cup, using the face flannels and towels. He thinks I don't know! I bought some cold fruit drinks for him, but he won't have those either.
He has told me it would be a good idea if I went to live somewhere else (oh the irony!).
Most annoying of all, having spent the winter closing windows and doors after he opened them, I am now spending the summer, opening them after he closed them. The house and conservatory feels like an oven, but he is wearing two shirts, two pairs of shorts and a jumper and says he feels cold!

 

[SeaSwallow]

@Dianej The hot weather really plays havoc with many people with dementia. I keep saying to myself that if I am finding it hard, how much worse must it be for my husband (still does not help the patience levels though).
If your husband will not drink regular fluids would he perhaps eat something with a high water content, for example watermelon cubes or an ice lolly, anything to get fluids into him.

 

[LyndaR]

I’ve found in the last couple of days that ice cream is going down really down.
I’m mashing banana and some strawberries into it.

 

[Dianej]

Thank you @SeaSwallow and @LyndaR for your suggestions. It doesn't help that my patience is at its limit in this hot weather. He does love ice cream but I had reduced his sugar intake because of diabetes, but what the heck, double ice creams all round!

 

[SeaSwallow]

Thank you @SeaSwallow and @LyndaR for your suggestions. It doesn't help that my patience is at its limit in this hot weather. He does love ice cream but I had reduced his sugar intake because of diabetes, but what the heck, double ice creams all round!

An ice lolly would have a higher water content.