Expert: Mary Gordon - 2/20/2011

Question
QUESTION: Hello Mary
I stumbled across your answers to peoples questions about alzheimers/dementia when looking for information about my mum in law. I have had a good cry at your well informed and compassionate replies as they struck such a chord with me and the experiences I am having.
She is in hospital having taken an overdose of sleeping tablets and pain killers (accidentally we think), and a couple of days prior to that she seemed to have experienced a sudden drop in her relatively mild dementia as she was getting very confused and experiencing hallucinations of her dead husband being alive again and she was trying to look after him (there were 2 cushions wrapped up in a blanket which in her mind was her deceased husband).
Now she is deteriorating in hospital - she fell over on the ward and has broken her shoulder and hip and has subsequently had an operation to pin the hip together.  She has no knowledge of having had the fall, operation or indeed that she is in hospital.  She seems to be regressing into the past more and more each day we visit. Her son (my husband) is now either her brother or father and she talks about things that don't make sense and is constantly miming things with her hands like imaginary knitting or washing up.  She constantly wants to get out of bed to catch the bus even though we gently tell her over and over that her hip is broken and that she is in hospital. Lots of other concerns such as not eating and drinking hardly, incontinence, etc.
Is it usual for there to be such a sudden change in the dementia? 3 weeks ago she was happily living in her little bungalow alone walking down to the village every day and generally caring for herself with just a little help from us ( she is 87).  Also Mary, how should we go about talking to her when she talks nonsense to us.  So far, we are carrying on the conversation as though everything she says is normal and when the evening meal comes round we spoon feed her as she seems to be unable to co-ordinate this herself but I worry that if we try to do everything she will forget how to herself. She has had to have a drip as not drinking enough - and has now had a catheter as her stomach got very distended and the nurses suspected she was withholding going to the toilet (which is obviously difficult with the broken hip and shoulder).   Her urine looks very dark too.

We want to do everything we can for her and would really appreciate any advice you can give us.

Thank you Mary.

ANSWER: Hi April

I can certainly relate to what you are saying. My mother in law was living in her own apartment, a little forgetful and fluffy headed, but managing not too badly on her own with visits from us. She had an appointment scheduled with the specialist about her forgetfulness, but hadn't yet been diagnosed with dementia. One day she was in a local shop, turned and there was a snap. She broke her hip, without a fall. She went into hospital for a surgical repair, and that is when the real nightmare began. She came out of surgery completely loopy. It was shocking. She didn't know where she was or that she had a broken hip. She was making very little sense. She kept trying to get up and get out of bed. It was so bad, the hospital didn't believe us when we said she had been living alone and coping well. They brought a social worker to chastise us, because they thought we were lying and in denial about her situation. They wanted her to go straight to a nursing home.

She then went to a rehabilitation facility for three weeks, and the confusion continued. We lived nearby and I was over there daily, but she'd accuse me of never visiting. Friends would visit and leave flowers and cards, and she would have no memory of where the flowers came from or that anyone had been in to see her. The rehab facility wanted her to keep track of her own medications so she could demonstrate she could manage when she went home. They drew up a simple chart with the days of the week across the top and times down the side, and she was supposed to check off each time she took her pills. She absolutely could not understand the chart or what she was supposed to do. She couldn't learn the layout of the facility and had to be escorted to the dining room every meal (the dining room was 20 feet down the hall!). It was completely unbelievable to us that there could be such a dramatic change post surgery - you'd expect perhaps some delirium right after surgery, but four weeks later, she was still dramatically impaired.

Once released and back at home (with all kinds of supports, such as visiting nurses and a physiotherapist, a housekeeper, social workers, and us there daily) she very slowly came back a ways, but certainly never to where she had been before her injury.

As you have observed, anesthesia can have an extremely dramatic and often permanent impact on people with dementia. It's very common, and no one really knows why that is. It may be that their poor injured brains just have no capacity to ward off insult. It can even happen to elderly people with no apparent dementia pre-surgery. It is as though the anesthesia unmasks something that was brewing. It's so common it even has a name - Post Operative Cognitive Dysfunction or POCD. If you look up articles on POCD or even just dementia and anesthesia, you will see lots of information. I strongly suspect this is a big factor in what has happened to your mother in law.

During her journey with dementia, my mother in law was hospitalized three times - the first with her hip, the second with a drug overdose not dissimilar to your mother's, and the third for another hip injury (that time from a fall onto a carpeted floor).

Here is what I observed about hospital stays. The staff in hospital wards are absolutely not trained or equipped to deal with dementia patients. Hospitals are not set up for the cognitively impaired. For example, staff would often bring her lunch in on a big tray on a trolley and leave it in the room, instead of putting the tray right in front of her. They would leave the heavy warming cover on the tray, which meant that in her addled state, she would not realize there was food under it (much less know how to get the cover off). They did not stay to make sure she ate, or assist her - or even stay to make sure she could open all the containers and knew what everything was. Then an hour later, someone would show up and take the tray away, even if she hadn't eaten a bite, and not even think to ask why. They also brought food that was inappropriate. Post surgery, she wasn't wearing her dentures, and they would bring her pork chops or other things that required the ability to chew.  If family hadn't been there, she could have gone hungry for days, which is hardly good for someone trying to recover and heal from illness or injury. Same thing went for fluids. My mother in law needed supervision and supports because she was so very confused. She needed someone by her urging her to drink, putting cups in her hands, prompting and reminding her. They couldn't leave it to her to ask or look after it herself with a jug and a cup at her bedside. People with dementia often don't feel hunger and thirst the same way a healthy person does, much less know what they should do about the sensation. In a lot of ways, even with well intentioned staff, the hospital was dramatically neglectful because we found they really had no idea about caring for someone with a dementia. The second time my mother in law was in for her other hip, staff just didn't "get" her problems understanding and following spoken instructions even though we told them several times. They would insist on talking AT her - long involved sentences and instructions or information they wanted her to know - which of course, she understood none of, and couldn't have retained even if she HAD understood. And then they would assume when she didn't respond or do what they wanted that she just couldn't hear, so they would shout the same instructions over and over again, unless one of the family was there to intervene.

The reason your mother in law's urine is dark is probably because she is not drinking enough. Dehydration is the usual reason.

Another factor that may be at work is that she may have had another minor stroke - as you know, with vascular dementia - sometimes called multi-infarct dementia - the person continually has tiny blockages or strokes, that may be so small they show no symptoms you would think of as a stroke. Each tiny blockage causes a bit of damage, and over time it accumulates and the brain injury gets worse and worse. She may have had more of these silent episodes. People with vascular dementia tend to advance in jerky steps, unlike dementias like Alzheimer's that tend to be a more steady decline. So, in the days before her medication overdose, your mother in law may have had one of these blockages that resulted in a lurch downward in her abilities. That kind of sudden change certainly suggests something was going on.

Yet another major factor may just be the trauma of being in hospital. Because they can't adapt well to new surroundings, being out of her familiar surroundings and routines will be extremely stressful for her, and that alone can be enough to make her very, very confused. Strange people, a lot of fuss and bother, strange surroundings, strange food, a lot of noise and bustle, a strange bed - and now tubes and a catheter. It would be enough to upset you or me,  with our intact brains. Imagine how deeply unsettling it must be for her.

The analogy I often use is that it must be like being very drunk at a large party full of people you don't know. Everything is a frightening swirl of sights and sounds coming and going and nothing makes any sense. You can't get anything to stay still long enough to get your bearings. It must be exhausting just trying to hold on.

My very best advise is to try to get her out of hospital as soon as humanly possible, and back home, even if you have to hire full time care for a while. At least at home, she can settle down, feel more secure and safe, get proper rest in a calmer environment, and get fed foods that she is more familiar with.  The acute care hospital is the absolutely wrong place for people with dementia. At home, give her a few months to see how much she comes back. It may be a slow process. Right now, she is in a crisis of both injury and stress, so it is very hard to know how much of her present deterioration represents a permanent decline. You won't know for a while where she's at in terms of permanent change.

When my mother in law was in mid to later dementia, she had to be in a specialized dementia ward. They found they had to stop bringing her to the bustling dining hall. In the dining hall, she would get distracted and not eat much. They discovered that she would eat much more if they kept her on her ward, by herself, sitting at a little card table, given extra time just quietly concentrating on eating with no distractions. In her own home, with familiar foods and quiet supportive surroundings and familiar faces, your mother in law may eat much more. You can't heal from traumatic injury without proper food.  

As far as being concerned that ou helping her will cause her to lose skills - that isn't true -right now, she needs help. When you get her home, you will want to consider if she would do better at feeding herself with more finger foods, or different textured foods. Fine coordination is impacted by dementia, as is the ability to chew and swallow, which is why some foods become problematic - for example, they can have trouble chewing so pieces of meat can be a problem, or they can choke on thin liquids - never mind have trouble getting thin liquids like broth or milk and cereal on a spoon from bowl to mouth because of poor coordination.  There are lots of good strategies for getting calories into a person who is having trouble with utensils.

As far as talking to her, correcting the person just makes them feel upset. She is doing the best she can. The best bet is to speak to her in very short simple sentences and questions. If your sentence is too long, she will forget the first part of what you said before you get to the last part! If what she says is garbled, you can try to guess what she is on about and fill in the gaps and react to that. Mostly, I would be kind and loving, and react to the emotional subtext - try to comfort and reassure. She may not be able to recognize she is talking garble, much less change that. When my mother in law did that, I would try to pick out what I could to interpolate what she was trying to say from the bits that made sense - most often I would just look at her like she made sense, try to react appropriately, pat her hand, give her a hug, anything to make her feel included and loved.

See what you can do to get her out of the hospital since I truly think being there is a big part of the immediate problem. And when she gets home, lock all the medication and cleansers up where she can't get at them!

Thinking of you. Hope this helps. I've rambled on a bit, so if I haven't answered any part well enough or you have more questions, feel free to come back and we'll talk more. She's lucky to have you looking out for her. The worst situation is a vulnerable older patient with dementia and no family to act as advocates for them when they enter the medical system. They really do fall through the cracks if they don't have someone like yourself actively involved in watching what goes on and intervening on their behalf.  

Mary - by the way, yours is my 1000th question!



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

QUESTION: Wow - your 1000th question - excellent!

Just had a phone call from the hospital - the nurses found her on the floor this morning! She had climbed out of the bed and fallen to the floor. Unbelievable, considering she has a broken shoulder, hip, catheter and cot sides on bed.
This is a very determined lady intent on getting out of hospital.

Fortunately, the doctor has examined her and no further injuries have occurred.

Nurses are now alarming the bed. Not sure how effective these things are - I suppose time will tell. Strangely enough, her brother visited for the second time last night... the first time he visited was when she had the first fall. Don't know whether his presence unsettles her or whether it's just a coincidence.

Thanks again for the time you take to try and help people like me who need good advice and a "shoulder to cry on".

Answer
Wow, what a lucky escape, although I will admit, I'm surprised they didn't do something immediately after the first fall. They know she is confused and she was injured while under the care doing exactly the same thing. Recent past behavior is a pretty good indicator for future behavior!

A bed alarm is a good idea. Many people have them for home use, but they tend to be meant to alert family that the person is up at night unsupervised (when they might get disoriented, wander outside or get into thing).

Usually bed alarms consist of a pressure pad that alarm if the person gets up. They make them for chairs as well. As long as staff are responding fast - but the issue might be that they won't realize she's trying to get out of the bed until she's over the side and off the pad.

Bed rails can actually be a danger to those who try to get out of bed because they may try to climb over the rails, or get caught and tangled in them, and then they fall farther and may hurt themselves more than if they just fell out of bed. Bed rails work better for those who either know what they are, or who are so physically and mentally incapacitated they couldn't attempt to get out.

Given that she is trying to climb over them, they represent more danger than a safety factor. She isn't falling out, she is climbing over. They might want to put the sides down to prevent this.

If she is getting up at home, you may want to lower her bed (i.e. set the mattress and springs right on the floor) so she won't fall far, or put something soft near the bed. Hospital beds are so much higher than what most of us have at home.

It's probably coincidence about her brother, given that her short term memory is probably shot. People with dementia often get very disoriented at night. Another thought might be a night light, which might help her to see where she is.

Although this article mentions Alzheimer's in specific, what it has to say is true for all the progressive dementias in terms of how memory works, and what is happening to the person. It's a great article - just think multi-infarct instead of Alzheimer's, since they both go down the same road and end up in the same place.  http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement
It's also got lots of good suggestions for how to view and deal with common behaviors.

Thinking of you.

Mary