Expert: Mary Gordon - 3/25/2010

Question
QUESTION: Hi, my dad is in end stage AD/Parkinson's. He had been eating every meal and suddenly isn't eating/drinking well and refusing some meals. I know that we can't put a time frame as to when this horrible disease will take him, but can you give me some idea of what to expect and be looking for in the near future.

ANSWER: Hi Kathy, has he been checked for any changes, like undetected infections? As you probably know, even a minor UTI will sometimes cause some major declines in cognition.

Having said that, he may be going into the final spiral.

What tends to happen in the last 6 months or so is that eating and drinking become more and more difficult as they lose coordination - they can't chew and swallow properly and it is as though it is too much effort to bother. We already know that they lose their sense of smell and taste as AD progresses, so it probably tastes like so much cardboard. They also seem to lose interest, as though they no longer feel hunger or thirst - or perhaps if they feel it, they don't know what it means or why they should want food or drink. My mother in law started pushing away the offered spoon or cup about 8 weeks before she passed away. She didn't seem to be uncomfortable at all. We were the ones who were concerned and distressed and who kept trying to get her to take some nutrition or fluids.

It might even be that they have just had enough and are starting to shut down shop entirely. Generally, within the last six months, most people will drop weight no matter what is tried. As a consequence, they become quite thin and frail and are susceptible to repeated infections. They just don't have the physical resources to fight infections off.

They move less and less, and become weaker and floppier. They need special handling to protect their skin and prevent bedsores (i.e. frequent positioning etc.)Quite often, they lose the ability to sit up or even hold their heads up and have to be propped in a chair or in the bed. They become less and less responsive and sleep more and more - sometimes they are quite hard to wake up, and even then, will quickly nod back off. Most often they have lost speech, and are quite helpless.

Certainly for our family, towards the last months, it really felt as though she had left us in everyway that mattered - as though she had vacated her body, and was like a silver balloon floating away, tied to her body by the most slender of threads. It will sound awful, but we prayed for her release when things got to the point where she had no quality of life, and we know she would not have wanted to soldier on.

The only positive thing is that I truly believe he will suffer less than you will. He is past all regrets, all worries and fears, so he has no thoughts to torture his mind or disturb his peace. He's not aware of his past or future. He's just cradled in your love, with no beginning and no end. It's you who has to stay behind that will find it so hard. You just have to do exactly what you are doing. Look out for him, love him, and sit by his bed and hold his hand. Lean over to him and tell him stories and everything you ever wanted to say to him. Who knows what he can hear or where he is flying off to. You want to look back and feel no regrets.

It's very hard to predict how long he may survive. Sometimes a very minor health problem can start off a final spiral. On the other hands, sometimes they live on in such a frail and fragile condition that it is amazing they can be so tough.

Hope this helps a bit. I know it is very tiring and discouraging. It's like running a marathon uphill through the rocks - and when you think things can't get worse, something new happens to try your strength. Your dad loved you, and wanted the best for you - so honor his wishes and make sure you look after yourself.

Thinking of you.  

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Mary,
Thank you for you quick response! Dad has been eating at least one good meal a day but has lost about 7 pounds in the past week. Last night as I was leaving the NH I noticed that he was sweating quite profusely. Is this something normal. I did mention it to the nurse on duty and ask her to look in on him. Also, he is on a permanent catheter. Is this common with patients? Is the risk of infection greater? Or could sweating be due to low blood sugar? I just don't want him uncomfortable in anyway and want to take the bull by the horns so to speak.

Answer
Hi Kathy, yes, absolutely, having a catheter increases risk of infection. - in fect, it's extremely high. Urinary tract infections are very common, and the frail elderly may not show any symptoms you can see other than behavioral changes. Many experts feel that catheterization is overused in the elderly. A condom catheter might be a better choice.

The sweating can indicate a problem with the catheter - usually a blockage. If the bladder fills up with too much urine, it could cause the person experience autonomic dysreflexia (AD) which results in increased blood pressure and sweating.

Catheters should be changed every 4 - 5 weeks as a consequence. Obstruction or blockage is the result of the formation of encrustations which is caused by the collection of bacteria, crystallization of protein, or mucus plugs. Another common problem is encrustation of the catheter tip with calculous material causing blockage of the urine flow. This encrusted material is a combination of calcium, phosphorus, magnesium, uric acid and protein debris. This occurs more frequently when the pH of the urine is alkaline.

Use of indwelling catheters over months and years causes bacteriuria (germs in the urine) and infection. Bacteriuria develops in most persons within 2 - 4 weeks after the catheter is inserted. Bacteria (germs) may enter the bladder either by traveling up from the bag to the bladder from inside the catheter system or outside on the surface of the system.

If your dad might be having problems with infection or blockages might do better if their catheters were changed more often than once every 4 or 5 weeks. If you think he has a bladder infection, the entire catheter and system should be changed and a specimen for urine culture taken from the newly inserted catheter system.

They should be checking this out - if he has an undetected infection or blockage, it certainly could make him go off eating.

Hope this helps.

Mary G.