Category: Ask Jo

It is so difficult to visit my Dad. I don’t even know if he knows who I am, he doesn’t really talk to me, and he will even walk off when I am there. Is it wrong to stop visiting? I just dread the visits and it makes me feel awful.
Guilty Son

Dear Guilty Son,
Visiting can be very difficult, and many family members choose to stop visiting. Most of them regret that decision in retrospect. Absolute #10 of the Absolutes for Caregiver Decision Making says: Never Despair, Instead Enjoy.

The word “enjoy” might seem out of place in such a distressing situation. Think of the best memories you have of your Dad and write them down. Did he smile, did he laugh, what did you enjoy doing together before he has Alzheimer’s? Take one thing that you shared, perhaps a picture of an old car, a toy, a picture, some food, ice cream. With that one thing in mind, approach him as if for the first time in a long time. Smile when you approach and say something like, “Dad! I was looking for you, look at what I have!” Then give him a hug. Even if he never hugged he is very likely to hug you back, and that will be a precious memory.

Together, look at what you brought. If he starts to wander away, you can bring it with and continue to talk about it, hold it, and discuss the memory you associate with it. Try not to ask questions, just make statements. You will be pleasantly surprised at the results. Visits can be just a few minutes, and they don’t have to be often. Practice will help you get better at this, so keep at it. You will be so glad you did when he is gone.

We just decided that my dad couldn’t drive any more, and we made arrangements to sell the car as my mother can’t drive either. My mom just called and said they went for a drive this morning, and since Dad drove just fine, they aren’t going to give up the car. What should we do now?
Daughter of Denial

Dear Daughter,
This is such a dilemma for family members. You should have your dad do a driving evaluation. It’s usually given by an Occupational Therapist and it will determine his capability to drive. It’s not a free exam, usually requires a doctor’s note, and is rarely covered by insurance. With an issue as important as driving, is worth the money to have this evaluation done. Depending on how advanced your dad’s illness is, it may not make a difference for your dad if he doesn’t remember the report. It will, however, absolve you from guilt (if a doctor says he shouldn’t drive, it’s not just you nagging at him) and that is very important.

Absolute #8 from the Ten Absolutes for Caregiver Decision Making says: Never Falter, Always Persist. It was written to address this familiar situation. As caregivers, we are often accused of being in denial. I found the word denial very offensive as I acted as caregiver for my Mother, so I changed the idea to “Eternal Hopefulness.” Caregivers want so badly for their loved one to get better, and for this long journey to turn into a vacation. This is probably the situation your mother finds herself in. If there is the tiniest glimmer that your dad could be okay in the future, it quickly invokes the hope in her that this has all been a mistake. We caregivers sometimes want to close our eyes, stick our fingers in our ears and hope that everyone will be just fine, the disease will disappear, and life can return to normal. This causes a pause, a wish and even a dream – but one must come back to reality and persist with difficult decisions.

My husband can really be embarrassing at times. He has always been a bit of a “ladies man,” and now he openly flirts with and makes inappropriate comments to some of the widows in our gated community. I tell them he isn’t himself, and he can’t help it, but they are usually offended. He also tells off-color jokes and swears at dinners parties, and I just don’t know what to do. If I say anything to him, he gets very annoyed with me and denies ever having said any of the things I mention.
Embarrassed Wife

Dear Embarrassed Wife,
It is important for you to understand that your husband has frontal lobe damage. The best way to understand that is to think of it as where his “manners” are stored. Whatever he thinks comes right out of his mouth, and he not only doesn’t have any control over what he says, but he doesn’t remember it, either.

I am so sorry you are embarrassed and you have every right to be angry – just make sure your anger is directed at the disease, not at your husband. As you have already discovered, it doesn’t do any good to try to explain or accuse, just change the subject quickly and move to a better one.

In the Ten Absolutes for Caregiver Decision Making, Absolute #7 says: Never Explain, Instead Act. If it truly becomes an issue for some of the ladies, and a private conversation with them doesn’t help, then you may need to spend less time with them when your husband is present. It is important for him to get involved in a senior center or someplace where there are people who understand the illness so he can be himself and visit with others – and so you can have time to meet with friends without his presence.

My health is failing, and has progressed to the point that the doctor told me I have to place my husband in 24-hour care. He seems to be fine, and they say he participates and is happy when I am not there. But the moment I walk in he starts crying, and continues crying until I leave. My heart is breaking, and I just don’t know how to respond.
Broken-hearted in Tulsa

Dear Broken-Hearted,
I am sorry this is so difficult for you and your husband. There are so many heartbreaking aspects to this disease, and the separation you feel from your beloved husband must be incredibly hard live with. First, know that you did the right thing. Your health is failing, and what would your husband do if you suddenly passed? This way you know he is taken care of and you can still visit with him.

First consider this: how did you handle difficult issues in your marriage? I imagine that most likely, you went through things together, held each other up when things were tough, and simply held each other when things were really tough. Your husband may simply be working through his grief and loss, and you are the only one with whom he is comfortable enough to show his true emotions.

In the Ten Absolutes for Caregiver Decision Making, Absolute #6 says: Never Endure, Instead Cry. It is okay to cry. It is okay to cry together, so try going to visit him armed with some tissues. Instead of a strong façade, cry on his shoulder like you would have 10 years ago when something truly awful happened. I think you will be surprised at how likely he is to stop crying, and comfort you. We know men want to fix things, and this gives your visits value – he gets to “fix” you by holding and comforting you. Trust me, it will be healing for both of you.

Just when I thought we had things all worked out with Mom, they have changed again! Mom agreed to move into a senior citizen complex for people with early-stage memory impairment. Then on Sunday, she had a mild stroke and she is now going to need more assistance. I am just overwhelmed with the prospect of having to make all these decisions over again!
Dreading Decision-Making

Dear Dreading,
The very reason this disease is referred to as a “journey” is because it continues to change. Your loved one’s brain is degenerating, and she is only going to get worse – not better. Often, both the blessing and the curse is that the disease progresses slowly. Unfortunately, one can’t put out a sign that says “already have one illness, can’t get another – sorry, my scorecard is full!” There will be changes in this process and there is little choice except to forge ahead, but with assistance.

The Fifth Absolute for Caregiver Decision Making is: Never Stop, Instead Progress. Your role as caregiver is one of the most difficult you will face in this life, and there will be times when you feel you just can’t take any more. Before you get to this point, you must request and accept assistance – and there are many ways to find it. Ask for assistance from the person that is stating she is no longer appropriate for the senior citizen complex, they will provide you with resources for your next steps. When you are feeling overwhelmed and trying to figure everything out on your own, it is sometimes difficult to admit you may not know the best path to take, or even what questions to ask. Make a copy of this and hand it to the person at the senior center, they will provide resources in your community – they do it every day, they care, and they want what’s best for you and your mom.

My husband wants to be with me all the time, every second of every day. I usually have some things I need to get done, but I want to be there for him in this time of need. I’ve been told that he should go to an adult day care center, but what if he refuses to go to that center? What if he isn’t ready for that yet?
Do I Day Care?

Dear Do I,

If your husband has a dementia diagnosis, then both you and he are ready for it! You need time to get your daily tasks accomplished, and he needs time with other people like himself. He needs a daily structure that is predictable and provides him with self worth – spending time with specialists and his peers can help with this. You must learn to think of this action as something you’re doing for him, not to him.

He can start at the center as a volunteer, then naturally segue into acting as a participant; all centers are very familiar with that process. There is no need to waste your energy trying to “prepare” him for spending time at the center, just enroll him and take him. You can be matter-of-fact about his questions. If he asks you where you are going, then give him a simple, honest answer: “We’re going to meet some friends.” If he asks what you are going in this new building for, then it is again appropriate to answer, “To meet some friends.” Answer truthfully and succinctly, but move forward.

Even if he grumbles that he hates it and he is never going again, just keep moving forward. Sometimes complaining is just an immediate expression of his current thoughts, not necessarily an accurate expression of how he really feels about the place. During your life together, did he ever complain about going to work? Did he go anyway? Was it really so terrible? You both need time to spend with other people; it’s healthy for your well-being and for his. As a wise woman once said, “I love you for better or for worse, honey… but not for lunch!”

My husband was a doctor, well-liked and trusted in our town, and a pillar of our community. If people discover he has Alzheimer’s disease, I’m afraid they’ll look down on him. I want him to be remembered as a respected physician, not as someone who doesn’t even know his own name.
The Doctor’s Wife

Dear Doctor’s Wife,
The first thing to remember is that you must try to think of Alzheimer’s as the disease that it is, and not some stigmatized, deliberate action that somehow makes him less than the person he has always been! If he had cancer, it would not diminish his career or community standing. Caregivers are often so fearful that their loved one will lose the “status” they held in their community life, that they often deprive them of the very interaction they need to maintain a meaningful life!

Absolute #3 of the Absolutes for Caregiver Decision Making is: Never Forget, Instead Remember. It sounds redundant, but it is about this very subject! Never forget who your husband is; in fact, you should actively remember all of his accomplishments and discuss them daily. One way to do that is to reminisce with your husband. Start in the middle of the sentence – and by that, I mean leave the word “Remember?” off the front end! For example, you could say, “When you received the humanitarian award on Channel 9, we all dressed up and went to the banquet. I was so proud of you that I actually cried!” He is very likely to remember it, especially if it was farther in the past and he can recount how he felt about the award.

Practice keeping your conversations going by stating sentences, not asking questions, and he will likely finish your thoughts or sentences. If he doesn’t appear to be interested in a certain topic, then try something earlier in his life such as, “When I went into labor with Judy, I was so afraid you would be with a patient and I wouldn’t have you there with me!” You will find a great deal of comfort in recalling the good and interesting events in your lives, and it will help you to feel connected.

My brother is really angry with me. I took Dad to the doctor where I was told he has Alzheimer’s disease and will require 24-hour care. My brother said that the last time he saw Dad he was just fine, and when he talks to him on the phone he is not at all confused. The thing is, he lives over 1000 miles away and hasn’t seen dad in over a year. Have I made a mistake, and could the doctor be wrong? What can I say to my brother to calm him down?
Dad’s Girl

Dear Dad’s Girl,
The best method to open your brother’s eyes is for him to come and visit. He should stay with your dad for at least a few days. Hopefully then he will see the times when your dad is confused or forgetful. It is possible that your brother may not be able to see what you are seeing or he may not agree with your findings, but if you are the one responsible for your dad and you have sought the advice of competent professionals, then you should be confident with what you now know about your dad’s situation.

Absolute #2 in the Absolutes for Caregiver Decision Making is: Never Justify, Instead Authorize. It was written because your issue is classic. Often family members at a distance are so conflicted that the only thing they feel they can possibly have control over is you and what you are doing. Of course his criticism will not be easy for you to accept and it certainly doesn’t improve your relationship. But this is the point where you need to rise above the situation. When you are feeling guilty, burdened and unappreciated, especially by family members, you probably ask yourself something like, “Why do I have to make these decisions?” In response to that feeling, you should ask yourself another question: who do you want to make these decisions? Imagine for a moment that your brother moved home to take care of your Dad, and he began to make all the decisions regarding Dad’s care. Could you accept those decisions without question or criticism? While it may be hard for you to reason with your brother, especially when he’s distanced from the situation, try to be patient and understanding with him. You receive a certain consolation from being the one in control, but therein also lies the burden of responsibility.

My Mother just will not take a bath, no matter what we say to her! Sometimes it takes 2 or 3 people to get her into the shower, and all she does is fight us. Why is bathing so difficult?
Just Got Wet

Dear Wet,
This common problem is addressed with Absolute #10: Never Force, Instead Reinforce. There are several ways to create the environment that is best to assist someone with a bath. However, force should never be used, for so many reasons. When you try to bully or force your Mom into the bath, it activates her “fight or flight” response. Her survival instincts are going to kick in, and she may have an adrenalin rush. That’s why you can only hold her down with several people helping, and in this circumstance, someone really can get hurt. In addition, in her mind, it reinforces the negativity of bathing, and the situation will become more and more fearful for her. She might not be able to remember the bath, or who forced her into it, but she will remember the feeling of terror. Bathing is a very private thing. Having 3 or 5 people trying to tear your clothes off – some of whom may be of the opposite gender, or seem to be strangers – and spray hot water on you, would be traumatic even if you weren’t a victim of Alzheimer’s!

You need to regroup, and calm the whole situation down. The best way to do this is to accept the fact that not everyone needs a shower every day to be clean. You can start by washing her feet, and legs and massaging them with lotion. Talk to her in a soothing voice. Wash her face and neck and even arms and massage with lotion. Wrap a towel around her and ask her to help you wash her upper body. When she is sitting on the toilet you can hand her a soapy rag to clean her private parts, or you can use a squeeze bottle with soapy water. You don’t even have to do them all at one time if she is resisting – each of these things can be done at a different time of day. As you build a rapport, her embarrassment and fright will dissipate, and bathing will get easier. Once she is comfortable allowing you to help wash her, you can probably progress to the shower. Continue to thank her for helping you, and discuss the ice cream (or other favorite thing) you are going to get when you’re done washing. As always, just move forward.