Expert: Mary Gordon - 5/16/2010

Question
Hello.  I know there are a lot of details in this, but I was hoping perhaps would could give some guidance.  I’m 27, and my dad is 66, and lives with my mom (they live together, but I don’t live w/ them).  My dad’s had a number of health problems – a stroke in 1988 which made him unable to work.  He also has diabetes, low kidney function, high blood pressure, high cholesterol, and on top of all that, now has Alzheimer’s disease.  

We’ve seen it coming on for a while, but it was hard to distinguish the difference because he had been forget since the stroke – but beginning last year, it was obvious something was not right.  He started forgetting where the bathroom was, stopped driving, lost interest in any activities he at one time did (such as watching movies), etc.  He now no longer remembers anything you tell him, and his speech makes little or no sense.  It’s very frustrating, giving he is only in his late 60’s.  I go over there 2x a week to help out as much as I can, but it’s very difficult helping when I’m so far away.  He has gotten progressively worse since last year – sometimes has “accidents”, and several falls, which I know is classic.  My question is this – he’s developed a dependency to my mom (not only a physical one, but a mental one) in which he has severe anxiety and goes into a state of panic when she is not around.  My grandpa had severe Alzheimer’s as well, and I don’t remember him being like this.  My dad will often cry if he cannot find my mom.  My dad will go to bed, and get up, and look for my mom.  

He’s had several medication trials – Aricept, and the latest is the Exelon patch.  With the patch, he seems more “alert”, and talks more, but with this, I definitely notice he has a hard time forming sentences correctly.  He has also stopped sleeping as much as he once did, which is likely going to make him go off the Exelon patch.  He will be up with my mom until 1:30-2AM or sometimes later while she will be sewing, watching tv, etc.  She always has to be there, and even has a hard time going to the bathroom or taking a bath.  If he slept more regularly, it probably wouldn’t be as difficult.  Do you have any recommendations?  Is this normal for Alzheimer’s patients to be so dependent on someone and panic when they are not there?  I wish I could be there more often to help, but obviously that’s not possible right now.

Answer
Hi Jason,  

Here is a good article on the experience of dementia, that might help you understand what your father is going through. This is worth printing out and reading a few times.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Keep in mind your father has no sense of time any more. If someone leaves, he doesn't know if they are coming back in 5 minutes or 5 days. He has no "feel" for the passage of time because his memory is impaired. He can't remember what just happened or anticipate what will happen. He can't use logic to figure out a reasonable explanation for someone's absence. He also may be having a lot of trouble recognizing people and places. He is still together enough to know he's completely dependent on your mother. Think of this like a small child who has lost their mother. What you are seeing is a form of separation anxiety.  Obviously, he feels safe and secure when your mother is there, and if she is not, he is in a panic.

What you are describing is not all that unusual. I have a friend whose widowed mother lived with her son. As her dementia took hold, she took to following him around all the time, completely terrified to let him out of her sight. No amount of reassurance or reasoning would snap her out of it because her memory was impaired and her ability to reason and draw logical conclusions was damaged.

You just have to think what a complete incomprehensible jumble his entire life has become. Nothing makes sense. He can't follow what is going on around him at all. He is living totally in the now, with no past and no future. His anxiety levels will be very high. Imagine if you woke up tomorrow in a strange place, surrounded by strange people, who all spoke a different language, and you couldn't figure out what had happened. You would be scared to death. It's like that for him all the time. He needs reassurance.

This is not going to get easier for your mother. She should consider talking to the doctor about anti-anxiety medication for your dad to see if it might help with his separation problems and calm him down a bit. Night time waking and wandering is also very common. People with dementia often get their wake sleep rhythms out of whack and will not sleep well. Unfortunately, constantly getting up and down is very disruptive for the sleep of the caregiver.

I know you know his condition will get worse and worse and the care more and more relentless. Even if he didn't have separation anxiety, they get to the point where you can't leave them alone for a minute anyway. They become just like a toddler (only a very large one) and you can't trust them not to get into things, eat inappropriate things, touch dangerous items,  turn on taps or appliances, wander off etc.

Your mother won't be able to cope with this alone. She should be looking into hiring some help, or appealing to her faith community, family and neighbors for assistance. Even if someone could sit with him a few afternoons a week so she could have a rest, or get out and attend to chores and errands. She also needs some time for herself, or she will get worn out and get sick. Sometimes a sitter at night can help, so she can get some sleep. She may also want to look into adult daycare, which might be a huge help. They have some wonderful programs and could keep him busy and out of the house during the day, so she can accomplish whatever needs doing, or just relax. Respite care is also a great idea - so she can have the occasional weekend off, or even take a little holiday to recharge her batteries.

In the longer term, I know you know, this is going to be next to impossible for her to manage, so as a family, even if you are not ready to consider facility care, you should start reviewing the options. After all, if she became ill, you would instantly be in crisis as he would need placement, whether temporary or permanent. Do the homework now so you are ready for anything, and know what is available close to where she lives, what the pros and cons are of various facilities and programs are, who they take, what he qualifies for, and what the costs are.

Hope this helps

Mary G.