- Diseases, Disorders & Conditions
How To Stay Strong When Your Loved One Has Alzheimer's
Having taken care of an Alzheimer patient for over ten years, and having seen others around me getting the disease and their children searching for the right path to deal with it, I have realized that people deal with the same circumstance very differently. Some choose a nursing home where their loved one can be better taken care of, some choose to have a caretaker come to the parent's home and live with them, and some choose to stop their life, roll up their sleeves, and take care of their parents literally by themselves.
When someone gets Alzheimer's, it affects the people close to them. It is almost like the illness is shared among people. In the beginning it is terrifying for the patient because they can see that soon their survival will be dependent on someone else and how well they take care of them. Can you imagine how that must feel? Especially if your loved ones never seemed to love you as much as you loved them. A lot of elderly people, when finding out that they have Alzheimer's Disease request to be placed in a home so that they will not be a burden to their family. The last thing a parent wants to do is be their child's burden. And this is what they think they will be. It is as much a nightmare to them as it is to their family and in order to save being told that they would be better off in a home, they offer to go. It saves them a lot of hurt. But the truth is when you are sick, you want to know that there is someone who loves you and who you love, taking care of you. That is why, I think, Alzheimer patients who are taken care of by their families tend to be stronger and happier and live longer even. People thrive when love is around them. When they open their eyes and a familiar face is there.
It is so easy to say - "They can't tell Wednesday from Friday. They call me Trish when I'm Barb or John when I'm Harry. They don't know who they are far less me." Well, I am no doctor, but when I see them look at me and say and ask who am I, there is confusion in their eyes, but there is also a look of knowing too; almost like it is at the tip of their tongue to say "Aha! I've got it!" Maybe that is just wishful thinking on my part but it kept me going believing it. And many a day my grandfather proved me right by asking right off the bat about something I didn't expect him to remember.
People would come up to me and say, "How are you managing?" and "Wouldn't it be better off if he was in a home?" Some would come to us crying and saying how terrible and heartbreaking it was to have to deal with the forgetting, having a father or mother with that same condition. They would say that looking at what their mother had come too was too painful and sometimes they would cry for hours on end at the end of the day.
Funny thing is, I never thought of it that way and I think that the mindset has a lot to do with your stress level and the experience you can have when you have someone in this condition. I tell you that it can be one of the most treasured periods of your life. Mindset is the key.
If you really think about it, feelings dominate our lives and the way how we feel can even determine how good a day is. When we start of in a great mood and something bad happens, sometimes haven't you said to yourself that your mood is so great that you would let nothing ruin it? Well it a similar concept.
First things first - you have to stop thinking that the person in front of you is your mother, father, grandfather, brother - stop. You are setting yourself up for a heartbreak. Think that this is a whole new person in front of you. Who is just like a child. Yes you are related to them and love them dearly, but what they have done in the past - what they can and can't remember - will not destroy their,or your, present.
Second as I said they have become as children. Think what did they do for you as a child? They bathed you and clothed you and spoke to you sensibly. They played with you but most importantly, they smiled and laughed with you so that you thought that everything was alright. Now they are the ones who are insecure. There are people long dead who they are sure are alive, they think that they are in a different time and place, they don't know up from down or left from right and you are the ones to set them straight. They are looking to you for guidance. No, no...don't get your eyes welled up with tears and start to panic. Breathe. I know how it is. You may walk into the room and find them crying and asking for their mother or angry and insisting that they are wanted at a meeting held in 1942. Good gravy! What to do? Be firm and decisive. Take control because that is what they need - a voice of calm and a voice of authority so that the uneasy feeling that plagues them constantly can subside for awhile.
When you are sure that your loved one has the forgetfulness don't ask them if they remember - they don't they think they don't they know they aren't and you are just making them realize that something is wrong. What does it profit anyone to upset them? I don't understand why people do it. I just don't. If they are sure about something like asking for someone who is dead and wanting to know where they are. I don't think it is wise to tell them they are dead. Why? Because they will cry and grieve and the next day ask again. And they will grieve over and over again. The thing is you want their life to be happy right? And they can be even though they have this it doesn't kill happiness. And you want to be happy with them right? Use wisdom. Try to change the subject to something that would completely distract them. But don't talk about fighting or wars or things like that because strangely enough, those things tend to come back up in conversation with them and they get bad dreams and such for weeks after. I know because I had an aunt who was foolish enough to tell my grandfather about a few murders that had occurred and we would wake up to him running the down the hall with a bat in his hand yelling, "Get up! There's a man in the house!" It would be morning before we could get him to settle down again and it would be repeated every night for two weeks.
The third thing is be a good mirror. They reflect your feelings so you must show confidence all the time and they will be more assured. The more doubt or hesitation you show, the more difficult it will become. Because they will doubt if you know what they are doing.
Another good thing to do which will help considerably is to practice consistency. Serve meals at the same time, have bath time be the same as much as possible and don't take too much trips out with them. Remember they get disoriented easily and so when you take them out and bring them back they either think they have to go out again, or that they have never arrived back home in the first place. If you have the blessing of children let them help! It will be an invaluable lesson that you would have taught them. It will be an example to them of honoring their parents which means you. Don't be afraid to show them what responsibility is and don't be afraid of letting them grab hold of it either. If you do, then you are sort of teaching them that true responsibility is a burden and it is not that. It is a blessing! By taking care of your loved one in a cheerful way, you are showing them an example of unconditional love. You are truly loving with no hope of getting anything back. Don't you think the youth of today need a lesson in that?
Finally - laugh. Laugh instead of crying. When you walk into the room and the underwear is on their head laugh. Please understand, I don't mean at them but at the situation. They can tell when you are laughing with them. They will laugh too. Put on some music that they love. The old time kind. My Gramps loved Sinatra and Nat King Cole. Put it on and sing with them. Sing to them when you are walking. I tell you they will love it. There is something about singing that brightens every day. Take them with you to look outside the window and smile and say what a wonderful day when they are in a crying mood. Then praise God and sing. I guarantee you they will stop. Didn't you do that with your babies when they were little and crying? Take them to the window and show them the stars and then sing a tune? Same thing. They are your baby now. Don't resent it. Embrace it. They never sent you to an orphanage when you were helpless and dependent. You owe them one for that.
- Keep all things breakable out of reach so that they cannot hurt themselves
- Make sure that there are safety locks or bells on the doors so that when they try to run away ( whether it be "home" or to the "board meeting") they can't get too far. You will hear them or they just won't know how to work the thing out. I have read too many stories of elderly people getting lost and not knowing who they were or where they came from.
- In order to keep their room smelling good, I would advise lining the beds with bed liners. Then make up the bed over it. We would put two on the mattress itself and two over the mattress and of course, he would wear the diapers as well. Wash and change the sheets frequently and if you can hang them as well as their clothes outside to dry.
- Always keep them looking fresh. Make and effort. Brush their hair and get nice smelling powder and what not for them. Dress them comfortably but don't let them look miserable.If they look miserable they will feel miserable. Complimenting them on how fabulous they look always brings a sparkle to their eyes.
- Make food attractive looking. Sometimes they don't like to eat and the prettier the food, the more likely they will eat. But monitor them or else they will throw it out the window when you are not looking.
- Monitor the bath. Sometimes they say that they are bathing and are really not. We once went into the bathroom to find him standing there with the shower running and biding the time to turn it off so that it would look like he bathed. He jumped when he saw us and began a string of excuses about how he had bathed already. (It was seven in the morning) :)
- Flushable scented wipes are really great things.
- Enjoy this time. enjoy it to the best of your ability and look them fully in the eyes and tell them how much you love them. You might think that you are doing this for them but truly it will benefit you.
- Taking Care of Dad, A Daughter's Account of Living with Alzheimer's Disease
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