Dealing with anger & hurt

My father, who has Alzheimer’s, has gone through so much in the last couple of months. My mother died, we determined he couldn’t live alone, we took him out of his home, and now he is living in an assisted living community. He is very angry, and calls me all the time at work. I don’t know how to talk to him anymore and I don’t know if he is in the right living situation. What can I do? I just feel like there is no right answer.
Feeling Miserable in Denver

Dear Miserable,
Your father isn’t the only one who has gone through a lot in the last couple of months; you have gone through all of this too. It is natural for this to be an overwhelming and difficult time for both you and your father; you’re in the midst of the grief process – not only due to the loss of your mother, but the loss of your father as you always knew him. Is it possible for you to get involved in an intensive grief group in the area? It would be so helpful for you to take one of the most important steps in caregiving – taking care of yourself.

Your father has reason to be angry- and it is a part of the grieving process. In addition, he can’t really process these changes because of his cognitive impairment. He is very likely to continue to ask for your mother, as he often will not be able to remember that she has died. That subject is covered in #1 of the Ten Absolutes: Never Argue, Always Agree. Because of his memory impairment; he will not only have forgotten that your mom has died, but if you remind him he will first relive the terrible news that she has died, then forget that you reminded him.

So, the best thing to do when he brings her up is to answer honestly, “I haven’t seen her today.” Then change the subject as quickly as you can. You are likely to have the opportunity to repeat this conversation several times, which will help you practice and get better at your response. In addition, while sorting through your mind for better subjects to bring up, make notes about all the good subjects and favorite objects or activities you and your father like to do. With this list, you can plan visits and enjoy them by focusing on changing disagreeable subjects to ones that are more pleasant, and focusing on how much you love your father as a person – regardless of the challenges you may be facing.

Trouble with activities of daily living

We are having so much trouble with my mother – she absolutely refuses to brush her teeth! Before the Alzheimer’s diagnosis, she was always very cavity-prone and diligent about brushing. How are we going to get her to brush? When we ask her, she insists that she already brushed them, and becomes very upset when the subject is approached.
Frustrated in DC

Dear DC,
Personal care becomes a real issue for our loved ones with dementia, because it is not only a privacy issue but a dignity issue as well. It’s possible your mom has forgotten how to perform the task of brushing her teeth. That’s why when you confront her about it, she becomes defensive – she’s probably embarrassed!

The first thing you need to learn is to stop confronting her or arguing with her. The real issue is to get her to brush her teeth and it is much easier than it might appear. A good way to translate Absolute #8: Never Command or Demand, Instead Ask and Model is to think of the saying, “a picture is worth a thousand words.”

When you need her to brush her teeth, go with her to the bathroom and start by quietly demonstrating to your mother the way you brush your teeth, perform one step at a time, and most likely her rote memory will continue. For example, hand her the toothbrush with toothpaste on it and turn on the water. As you begin to brush your own teeth, she is likely to mimic you. You may need to take her brush, run it under the water and brush her teeth exactly as she has done for years. As you demonstrate the action and provide her with her toothbrush, standing beside her so she can see you, and brush your teeth and she will likely brush hers – in this way, a picture really is worth a thousand words.

When bathing gets difficult

How do I get someone to take a shower when they are violently combative, especially if they are soiled and must be bathed right away?
Getting Hit

Dear Getting Hit,
In my training presentations, I often refer to this situation as a “lactose moment”. As they age, some people become lactose intolerant and will have very explosive bouts of diarrhea. This is a particularly tricky situation for someone with dementia, as they may not have time to process what is happening and find their way to the bathroom. While your loved one may not have all the capabilities she once had, be assured she will still find this occurrence very embarrassing.

Absolute #3 of the Ten Absolutes says, Never Shame, Instead Distract. In this case, the distraction you will use will be the “befriending or rescuing” technique that can include a little bribery, if necessary. When you see someone in this situation it is best to find something large like a sheet or towel, and approach them and say very quietly, “you must be uncomfortable, let me help.” Wrap the sheet around them so the cold, embarrassing area is completely covered. Then, with an arm on one shoulder, have them walk with you towards an area where they can be assisted with bathing.

If they already hate bathing and are reluctant to go into the bathroom, it is perfectly alright to offer them a cup of coffee and a comfortable chair just outside or maybe even inside the bathroom. Once you get them to relax a bit, you can usually get them to move to a chair inside the shower area. If they don’t yet trust you to remove the sheet and clothing, then make certain the water is warm and comfortable. Show them the warm water with the shower wand. Then, while talking in a comforting tone, remove their shoes and socks and start running the water on the lower part of the body, even while their clothing is still on. It helps clean the clothing, and as it gets wetter it will become more uncomfortable and then you can assist them with removing the wet things. Make certain you offer them a towel or two to cover up with as the clothing is being removed to maintain their modesty and dignity. This works almost every time. Lastly, you can assist them with wrapping in a towel or another sheet and possibly even helping them get dressed before leaving the shower room.

Denial of the fittest

My mother is eighty-five. Does it really matter if she is just a little bit confused? She functions perfectly well on her own at her house. Why should I throw a monkey wrench into her life by taking her to the doctor, only to find out that something is wrong with her? Besides, I read that they can only really tell if someone has Alzheimer’s disease by doing an autopsy.
Doubting Susan

Dear Susan,
It is true that one can only identify Alzheimer’s with a brain biopsy, which is most often done at autopsy. However, the real reason to take her to the Doctor is so s/he can do the tests that are necessary to see if your mother needs any kind of treatment. Why is that important? Because the medications we have today work best with early detection.

I know from experience that it is extremely difficult to make decisions on behalf of someone else. Often it is just easier to ignore the little things and hope it will go away. Your dilemma is so common that I have created a set of ten absolutes exclusively for caregiver decision-making. Absolute One is: Never Assume, Instead Examine. This means one thing and one thing only: first make certain her house is in order, medically and financially – I’m talking about insurance, powers of attorney, wills, trusts and other ways to protect her. Before you do anything, talk to an attorney specializing in elder law in your state. They usually have a free first consultation, so you have absolutely nothing to lose. Next, make that doctor’s appointment and accompany her to the office!

If she truly is just a little confused and it’s still safe for her to live alone, you will have your opinion verified. If she needs medication and assistance to be safe, then you can get guidance. The anticipatory guilt you are feeling now about ruining her life is tiny compared to the guilt you would feel if something happened to her, m or if you discover too late that she was afflicted by something easily treatable.

Doctor’s visits & direct communication

I took my father to the doctor the other day, and the doctor talked directly to him. He came in and said, “How are you?” and to my surprise, Dad said, “Just fine.” Dad seemed genuinely happy to be addressed, so I mimicked the doctor and included Dad (using the plural “we”) when we asked some questions that had come up since our last visit. Is this okay to do?
-Had A Breakthrough

Dear Breakthrough,
Absolutely! The first thing I have to say is: good for the doctor for keeping your dad in the conversation. This issue is very common and is addressed with Absolute Number 9: Never Condescend, Instead Encourage and Praise. It is so important that we not talk about our loved one, right in front of them, as if they are not even there. This can lead to angry outbursts or just an overall bad mood for your Dad!

To encourage others to keep your Dad in the loop, what you need to do is make certain that you and your dad are next to each other, and both facing the doctor or other person when he or she enters the room. When your dad answers the doctor, you agree with him by saying, “Dad is doing great in so many ways but we have a few questions about things that have come up since our last visit.” This keeps your dad in the loop as he plays an active role in at least part of his care, gets your questions answered, and makes the doctor feel that both of you are having your needs met. This is clearly just as simple as literally positioning yourself and your dad together, and restating what your father is saying in first-person plural. This is truly a win-win situation for everyone involved.

Getting trapped in your own house

Dear Jo,

It is getting more and more difficult to get out of the house with Dad. He has difficulty getting in and out of the car, and often at restaurants he can’t seem to sit down on the chairs. I want to be able to take him places, because it’s fun for both of us when we go to lunch or do a little shopping. Is there anything we can do to make the process easier?
Need To Simplify

Dear Simplify,
This is a very common issue for many loved ones. A process called Apraxia makes it more difficult for a person with Alzheimer’s to perform major motor skills. It’s not that it hurts or they can’t do it, but their brain simply isn’t sending their body the right messages.

This falls into the area of Absolute #8: Never Command or Demand, Instead Ask and Model. A picture is truly worth a thousand words. If your dad is having difficulty sitting down, position yourself somewhere he can see you, and go through the motion of sitting down. Very often that seems to provide people with dementia or Alzheimer’s a visual cue, and they will then sit down. It sounds too easy! It is easy, and it really works. The same thing works when people stop eating. Often it is because they just don’t know what to do next. If you sit across from them and eat, they will often model what you are doing. It is okay to take this easy route, it’s certainly much better for you and for your dad than trying to force a motion that isn’t quite happening.

Never Lecture, Instead Reassure

Dear Jo:

It is so difficult to get anything done or to go anywhere!  I get Mom all dressed and ready to go, and while I am outside getting the car ready, she takes off her shoes – sometimes even her clothes!  I need to get her to the senior center every morning so I can get to work on time.  I get so frustrated that sometimes I yell at her!  That just leaves me feeling so guilty.

 

Jo Says:

I had this same problem with my Mother.  She just wasn’t aware of the importance of time, or my schedule. Absolute #4 says: Never Lecture, Instead Reassure.  It is an excellent reminder for this issue. 

 

When I had small children I would never have left them indoors to wait while I went to get the car! Of course it would have been easier, but it would have been extremely dangerous for my children.  The same principle works here.  What I had to accept was that I needed to keep Mom safe at all times, and that meant better planning on my part.  However, even with better planning, when I took her to the car with me, there were some days we just couldn’t get things in the right order and I would lose my patience.  When I became impatient, there were times I raised my voice.  Or instead, I would try not to show how irritated I was, but she always sensed something was wrong. 

 

When you are feeling annoyed and you want to lecture, the best thing to do is to apologize – even if you have done nothing wrong!  If you can honestly say something like, “I don’t know what is wrong with me. I must have gotten up on the wrong side of the bed!  Do you ever have days like that, Mom?” she is very likely to respond positively, and might even offer to assist.  This way, you can move forward in a positive and enjoyable manner.  The very act of admitting you’ve goofed changes your status, helps you to smile and laugh, and reassures your loved one that you are in this together.