Ask Jo – Page 5 – Alzheimer’s Hope

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 say “You can’t…”

I got home from work one day and the house smelled really funny. I could tell from the look on my Mom’s face that something was very wrong. “I was going to surprise you and fix supper. But I think I messed it up,” she told me. I went into the kitchen and on the stove was a blackened saucepan with four really strange-looking eggs. Apparently, she had tried to boil some eggs, but the pan had gone dry and the eggs burned before she noticed. We were both lucky that she finally did notice the pan, and was able to turn it off. Fortunately, I was well-trained enough to know not to fuss with her about the pan or the eggs. I just said, “Well let’s just go out to eat at that diner we like.”

I wish I could tell you I never left her alone again. That incident should have been a big red flag that she shouldn’t be alone. Unfortunately, I left her alone many times after that. While she never tried to cook again, she was nevertheless alone. It was actually several years before I even considered having her cognitively evaluated.

Absolute #7says, Never say “You can’t…” and instead find out what they can do – and there are a lot of things your loved one can do! How quickly our loved one can enter the “You Can’t” world and the standard response is to tell them what they can’t do and try to extract a promise from them that they won’t do it again. Somehow we seem to assume that they can truly ‘give up their disease’ and actually remember that they made a promise – as if it were an optional disease process.

Our responsibility as caregivers is to focus on our loved ones’ abilities, not their disabilities. We need to help them discover the things they can do well, and to provide those activities and introduce the environments where they can excel. This is an important responsibility for every caregiver, and the one that is often overlooked. Actually, we have the responsibility to find these activities and to provide a means for them to have opportunities like these included in their lives on a daily basis. The appropriate response to navigating this disease process and journey is to focus on them. It is critical to provide what they need, and a sense of purpose (which we all need!) so our loved ones have meaning and value in life.

How do I take care of me?

Dear Jo,

There is really no one to assist me with my husband, and I am exhausted. He doesn’t sleep at night, and he refuses to go to the senior center. Last time I left him home while I went to the store he wandered away, and a neighbor brought him home. Everyone tells me to take care of myself. But how am I supposed to do that?

Exhausted and Alone

Dear Exhausted and Alone,

You are in the place many caregivers find themselves, especially after a few years of diligent and self-sacrificing full-time care. This situation falls under the sixth Absolute: Never say, “I Told You…” Instead Repeat/Regroup. The “I told you” that I am speaking of is when you find yourself gritting your teeth, clenching your fists, raising your voice over some little action that would never have bothered you before. This is a definite sign to watch for that means you are already burned out. The person you need to regroup with is yourself.

You truly have to ask yourself, “What would happen to him if I had a heart attack and died?” With that in mind you need to know and accept that your greatest responsibility as his caregiver is to make certain you are still around to make sure his needs are met. That does not mean you have to meet all his needs (or wants) by yourself. You must have help as a caregiver, and it can be very difficult to accept help from anyone. Think of it as what he needs: he needs to go to a senior center daily so he has friends like himself. He needs to have other interests so that he isn’t so dependent on you. Don’t ask him if he wants to go to the senior center and don’t worry if he doesn’t like it very well. Sometimes it’s okay to let someone complain – did he ever complain about going to work every day?

Enroll him in activities, get ready in the morning and just go. When you get there, you can call the staff inside on the phone and they will gladly come greet him and take him inside. If he absolutely won’t go with you, then ask a friend of his to pick him up and take him to the center. There are also plenty of companion care services for hire (they are listed in the phone book) that can and help get him ready every morning and take him there.

Missing Mom

Dear Jo:

I miss my Mom and the relationship we had so much. It seems like we can’t have a real conversation about anything any more. It is so difficult to visit. I don’t know what to say or do, so sometimes I just don’t visit her. Afterwards I feel so guilty! Is there a way to have enjoyable visits?

Signed,

Missing Mom

Dear Missing Mom,

There are lots of ways to have enjoyable visits! True enough, it takes some change in your language – and some practice. Absolute number five says: Never Say “Remember,” Instead Reminisce. This will help you with visits.

Your mom will remember the past very well, and will like to talk about it. The most important thing to practice when you initiate these conversations is to try not to use the word “remember,” and start sort of in the middle of the sentence. With my Mom I would say something like, “When I was little and you were out milking the cows, you would ask me to listen for the phone. I always answered whenever it rang. Sometimes our neighbor Mrs. Kippes would get really mad at me, because it was her ring and not ours!” With that, Mom would just light up and start talking about the farm, milking and even about the neighbors. She would continue talking and we would both enjoy our visit.

Too often, we caregivers try to visit by asking direct questions, and when they don’t know the answers, they don’t know what to say! They may make something up, and we may become concerned that they aren’t telling the truth. We often confront them about how we remember that particular instance. This can result in arguing, reasoning, shaming or even lecturing, and so the visit becomes difficult for both of us.

Each of these first five Absolutes are about communication, and remember, they are all interchangeable. We just need to shift our focus on enjoying our time together, not on establishing facts about things that probably aren’t really that important anyway.

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.

Feeling suspicious is very common

Dear Jo,

Our neighbor, Jack, often comes over to help out with Dad. At times, my father gets angry at me or Jack and accuses us of stealing all his money. No matter how many times I try to explain that we are there to help him, he continues to be angry and yells, “Get out, and never come back!” I can handle this, but Dad doesn’t understand when I ask him to be nice to our neighbor. How can I get him to be nicer to Jack? We really need the help he provides.

Jo Says:

Feeling suspicious is very common for people with memory impairment. They often put important things in a ‘safe place,’ and when the impaired person can’t find those things, it can be very frustrating for them. It is logical to blame someone (especially a “stranger”) when things go missing. It’s also very embarrassing for your dad to be confronted with his memory impairment or mistakes. Absolute #3 tells us: Never Shame, Instead Distract. This can be a very useful tool.

Remember that even though his memory is going, your dad’s emotions – those feelings that make us all human, and direct almost all of our actions – are alive and well. Emotions are all he has to govern his actions by. When we embarrass someone with Alzheimer’s (or anybody at all, for that matter), it makes them feel ashamed, out of control, and hurts their feelings. Since your dad may not have a sense of how reasonable his actions are anymore, this can often result in outbursts of frustration and anger.

You and Jack both know something is wrong, and you are truly there to help. The best way to help is to focus on pleasant things. You can validate your dad’s feelings about what he’s lost by saying something like, “That must be really difficult for you, Dad.” Then go on to a subject that is pleasant for everyone, such as, “Look what Jack brought over to go with our coffee! Don’t these cookies look delicious?” This may seem like a form of bribery, but let’s be realistic – bribery works! So if you come prepared to get your dad involved in something pleasant, like drinking coffee and eating cookies, and then become engaged in that subject, the unpleasant subjects will dissipate. If he starts asking again about his money then you can say something rational and honest like, “Well! We certainly like to keep most of our money in the bank, but if you need some, I can lend you a few bucks.” In both of these ways, we steer the situation in a better direction while still letting our loved ones keep their dignity intact.

My husband insists that he is capable of driving

Dear Jo,

Even though the doctor said he shouldn’t drive the car anymore, my husband insists that he is capable of driving. I tell him over and over that he can’t drive, so now I have to, and he gets furious with me! I really don’t know what to say anymore. We argue about this all the time.

Jo Says:

Driving is one of the most difficult issues surrounding this disease process. For this situation, the best answer comes from the Second Absolute – Never Reason, Instead Divert. Because of his memory loss and your husband’s inability to consistently store and/or retrieve new information in his brain, he truly won’t remember what the doctor told him. For that matter, he is going to have difficulty keeping track of the information you are providing him, no matter how many times you tell him. It is literally going “in one ear and out the other,” because he forgets that new information after a short period of time.

The best thing to do is to change the conversation; he cannot, and will not, be able to respond to reason. When he starts talking about driving, you can simply divert and change the subject, completely. Introduce something new like “What kind of ice cream are you going to get?” It will feel strange at first, and may even make you laugh – which is great! When you stop feeling so stressed (and he will read it on your face), he won’t be so stressed, and from there you can move forward. This does not remove the seriousness of the driving issue, but for now it provides relief, and you can move ahead. One of the most difficult things to learn is to keep discussions about issues like these to a minimum – or if you can, totally eliminate them. However, if you can get your husband to talk and tell you stories, even if you hear the same ones over and over, you will find more enjoyment and less confrontation every day.

I Want to Go Home

Dear Jo,

I recently placed my mother in an assisted living community. It is really difficult to go and visit her, especially because when she sees me, she tells me she wants to go home. I don’t know what to say or do.

Jo Says:

“I want to go home” is such a common phrase for a person with Alzheimer’s or related dementia that it has become a chapter title in almost every book about the disease. In the very first of my Ten Absolutes, we can discover the remedy for this common desire. Absolute #1 says: Never Argue, Instead Agree.

It appears that when they are asking to “go home” it is really their way of saying they want to find a better place in time, in their mind. After all, Alzheimer’s causes the sufferer to travel back in time to another part of their life. So when Mom or Dad ask to go “home,” they may not mean the last place they lived. They may mean their childhood home, or even a moment in time when they felt loved by their own parents.

Meanwhile, as the caregiver, all you can hear are your “guilt tapes.” You think, I knew I shouldn’t have placed mom here! She is unhappy – I must have made a mistake. What am I going to do now? Regardless of your fears, what needs to happen now is that the two of you find a way to face this together.

The best way to do that is to tell the truth. This is as simple as memorizing 3 little words, made up of 5 simple letters: “So do I.” And it is, in fact, the truth when the subject of home arises. As a caregiver, you probably want to go home, or back to a time when the parent-child dynamic was the way you’ve always known it. Anything feels better than going through the pain and disagreement of dealing with this subject. After you say “So do I,” you can then change the subject to a more enjoyable one. Go to her room or apartment and talk about her clothes and how pretty she looks in her favorite dress. Make visits as similar as possible to the kind you always had when she was home, and don’t forget to concentrate on enjoying time together.