Forty Things An Alzheimer’s Caregiver Needs To Remember

All too often caregivers find themselves in situations where they constantly feel they need to explain what they are doing and why they are doing it. All too often they run into people, including family members, who just don’t understand Alzheimer’s Disease, and for the most part never will. All too often caregivers have more stress from these type situations than they do with the care giving itself.

These are just a few of many things caregivers need to remind themselves when taking on the responsibility of caring for a loved one. You are a caregiver for the purpose of providing security to your loved one and maintaining their health, welfare, safety, and dignity. Anything beyond that is not your responsibility.

Each Alzheimer’s patient is different from the next. No one person has the same reaction to a situation. Each situation is different--every moment. This list is to help all caregivers remember they are doing a good job in taking care of their loved ones, and to remind them not to be too hard on themselves.

1. I need to remember I am here to do a job and that job is to take care of my loved one.
2. I need to remember that I am doing the best thing I can possibly do for my loved one.
3. I need to remember my loved one comes first before all others.
4. I need to remember to keep my loved one safe.
5. I need to remember to keep my loved one fed.
6. I need to remember to keep my loved one warm.
7. I need to remember to keep my loved one clean.
8. I need to remember to keep my loved one healthy.
9. I need to remember to keep my loved one comfortable.
10. I need to remember to keep my loved one happy.
11. I need to remember to keep my loved one free of pain.
12. I need to remember to keep my loved one free of aggravation and aggression
13. I need to remember to keep my loved one free of anger and upsets
14. I need to remember to keep my loved one from being distracted.
15. I need to remember to keep my loved one in familiar surroundings.
16. I need to remember to keep my loved one stimulated.
17. I need to remember to keep my loved one from loud noises and busy environments.
18. I need to remember to keep my loved one feeling adequate and worthwhile.
19. I need to remember to keep my loved one remembering as long as possible.
20. I need to remember to find solutions before behavior problems appear.
21. I need to remember that I do not need to explain my decisions to those who don’t agree with my decision; the caregiver’s concerns/wishes should carry more weight.
22. I need to remember I do not need to explain why I have to keep my loved one on a schedule.
23. I need to remember I cannot make others accept what they do not want to accept.
24. I need to remember I do not need to be everyone's "excuse" for what they cannot do or do not understand.
25. I need to remember others are responsible for their own actions.
26. I need to remember I am only responsible for my own actions.
27. I need to remember I am only responsible for my loved one’s feelings and mine.
28. I need to remember I am not responsible for how often someone decides to visit.
29. I need to remember that not everyone is as flexible as I am.
30. I need to remember that not everyone is as patient as I am.
31. I need to remember that not everyone is as understanding as I am.
32. I need to remember that I shouldn’t withdraw from social activities.
33. I need to remember not to worry about tomorrow, but instead think about the moment.
34. I need to remember to quit worrying about what other’s think or say; I am the only one who knows what I’m capable of doing.
35. I need to remember not to be disappointed when I don’t receive help.
36. I need to remember to give myself permission to grieve the losses, but also focus on the good memories.
37. I need to remember my loved one feels my love and remind them they are loved and respected.
38. I need to remember to take care of myself.
39. I need to find time for myself.
40. I need to remember my spirit can’t be broken.

More often than not the responsibilities, problems, and feelings of a caregiver aren’t taken into consideration by those around them. If someone hasn’t told you you’re doing a good job in taking care of your loved one, read this list often to reassure yourself, and take this time to give yourself a pat on the back for doing the best job you can do.

There are times when you reach the point in your care giving where you need to learn to ignore problematic people and situations; continue to do what you’ve been doing for your loved one and make sure you take care of yourself as well. You cannot let people who don’t understand Alzheimer's Disease, and its many ups and downs, upset you and possibly endanger your health. If that happens, there would be no one to care for your loved one.

To all Alzheimer’s caregivers: Take a deep breath, read the 40 reminders often, and pat yourself on the back for sharing this disease of crossroads with your loved one until the road wanders no more.

Always remember: With Alzheimer’s Disease, the past is no longer, there is no future; there is only each moment. Cherish those moments, for they may be the last.

For more information about Alzheimer’s Disease visit the Alzheimer’s Association website.

Forty Things An Alzheimer’s Caregiver Needs To Remember has been published at Blogcritics.org in the Culture section.

Back on Mom’s Schedule—Back to Unneeded Stress

Monday, August 27, 2007

It felt great sleeping in for two days but I’m back to waking up at 5:30 or 6:00 and back to sticking with Mom’s schedule. I woke her at the usual time of 6:30, washed and dressed her, took her blood glucose test for her diabetes, had her take her pills, and guided her out the door and into the car to take her to the Day Care.

The sun was shining on my deck when I arrived and Two Feather and I sat outside and enjoyed our morning cup of coffee together. Neither of us felt like doing much so we just sat and enjoyed the sun and talked about the projects we need to do around our house and Mom’s.

My flowerbeds are overgrown with weeds and wild grapevines from the woods surrounding the house have stretched into the yard and over the fence. When fall comes and trees and bushes lose their leaves, we’ll have a major project on our hands.

I called for estimates last week to have a few trees removed from Mom’s because they are a threat to the house and telephone and electric lines. I also asked for an estimate to have the leaning trees removed from behind my garage and along the side of my house. Better to be safe than sorry.

Two Feather and I talked about how we’ve neglected our house and yard because we don’t really have the time to take care of it after we take care of Mom’s place. We’ll eventually get the work done at our house. It may take some time, but we’ll whittle away at it little by little. We will have to start working on it in the next month or so in order to make any progress before winter sets in.

Today was a beautiful day, sun shining and not too humid, and discussing our thoughts on sprucing up the place gave us something to talk and think about. The time seemed to fly and before we knew it the time had come for me to leave to pick up Mom at the Day Care.

The nurses at the Day Care told me Mom didn’t have a good day. She was moody all day and had several incontinent accidents. That was apparent to me when I walked in because Mom had on the “spare clothing” I’d given the Day Care in case of accidents.

On the ride home, Mom’s mood didn’t seem to be any better. Mom didn’t remember that she had been cleaned and changed at Day Care. I guess one of the good things about Alzheimer’s disease is that the loved one forgets they were embarrassed. Unfortunately, the feeling of embarrassment seems to stick with them in an uncertain way. It changes their mood and they can’t remember why they’re angry, but the anger lingers.

Mom didn’t make it to the bathroom once we arrived at home, so I ended up putting her in the shower again. Then, she remembered what happened during the day and became angrier.

“I hate this,” she said. “I did this all day.”

“I know, Mom. Don’t worry about it. Sometimes we have accidents. Let’s get you cleaned up and you’ll feel better.”

She cried the entire time she was in the shower.

Needless to say, after those type incidents, making dinner and trying to eat is a challenge for the caregiver. What appetite one may have had, is gone. In most cases, the loved one normally forgets the incident, sits down to a nice meal, and wonders why you’re not eating dinner, too.

Mom’s appetite isn’t what it used to be. The diabetic diet isn’t the problem, but the amount of food is. It used to be that she could eat the limited card-deck-size piece of meat, the potato or starch, and the vegetables, and ask for more. Lately, I’m lucky if I can get her to eat half of that before she tells me she’s full. Tonight she ate only a few pieces of chicken, a few bites of baked potato, a few teaspoons full of applesauce, and no vegetables.

We sat at the kitchen table and talked for a few minutes and she began to doze as we talked. We were running a bit behind her normal schedule because of the shower, so by 5:45 she was ready for bed; by 6:00 I could hear her snoring through the baby monitor. She’d had a long, hard day with all her accidents and mood swings, and the continued louder pitch of her snoring told me she was totally exhausted.

Two Feather normally comes down to visit me after Mom is asleep. She’s been aware of this since I moved in and said she feels better when he’s here. She’s even told him he should move in, too, but he respects her too much to have her embarrassed by the possibility of him seeing her walking through the house half dressed at times. He always side-steps this offer by saying, “I appreciate the offer, Mother, but I need to take care of our house, too.” She’s content with that.

We sit upstairs and quietly talk for about 30 minutes and he goes back home. This evening because Mom and I were running behind schedule, his visit was later than normal. He came down around 6:30. Just before he was getting ready to leave at 7:00 PM Mom’s phone rang.

Everyone in the family knows Mom goes to bed early and has been directed to call my cell phone if they need to call after 4:30 PM, so I figured it was a telephone solicitor.

Boy was I wrong. It was my brother. He called to ask me why there were stakes and rope at the top of the path. I told him that after the recent storm the path was blocked with trees and Two Feather put up the stakes and rope because he’d be working down there with his chainsaw. He knows his grandchildren play in his yard and he wanted to make sure no one came near there when he began to work on cutting up the fallen trees.

“That’s not why you put them up,” he said. “You put them up to make a point!”

I’m so tire of my brother and his attitude. The only time he calls “me” is to bitch about something.

“What the hell point would I be trying to make by staking and roping off a path that you haven’t used in three years?” I said. “You haven’t used that path since you told me to tell Two Feather he had to cut the grass because you were going on vacation. You haven’t been back to cut the grass or do anything around Mom’s house since. Do you realize how ridiculous and childish you sound?”

“You put them up to make a point,” he repeated.

“So you’re calling me a liar?”

“Yes,” he said.

“Two Feather has never cut wood close to someone’s yard before. I don’t appreciate being called a liar. Excuse me for the fact that Two Feather shows consideration to everyone. I don’t need to explain to you what Two Feather or I do on Mom’s property, and I’m really sick of your childish nonsense. Why don’t you grow up? By the way, what time is it?” I asked.

“Seven, why?”

“What time does Mom go to bed?”

“Five.”

“So, why are you calling her home phone at 7:00 PM? You know to call my cell phone after 4:30. And since you called only to start childish nonsense again, let me remind you that you’re not to stop by the house without calling and verifying if it’s a convenient time.”

“There was no problem when Angel was there.”

“You don’t see barging in on someone else’s visit a problem, I’m sure. But problem or not, it’s a matter of courtesy toward my mother. I either don’t answer the phone because we’re not home or I’m busy with her. Busy can mean many things: She has company, I’m giving her a shower, cleaning up her bed after an accident, cleaning her up after an accident, or her mood and agitation level is bad. The last thing she needs is you just stopping by when we’re ‘busy’ with something like that.”

After a few more insults from my brother bringing up past garbage that has nothing to do with Mom and her illness, I gave up and hung up the phone. I’m so tired of his intimidation tactics and his attitude toward me, and his lack of consideration and courtesy toward my mother.

I’ve sent him information about Alzheimer’s Disease so he could get a better picture of what is going on; to help him understand. I even marked off the stages that she’s already been through. I’d think that he’d have some clue since my dad had this disease as well and died from it nearly 10 years ago.

Sometimes caregivers can explain until they’re blue in the face, the need to keep the loved ones on a schedule, the many things that can and usually do happen during the course of a day, the need to clean and change the loved one, the moods, the agitation, etc., but some people just don’t get it!