I Have to Leave You Now: A Survival Guide for Caregivers of Loved Ones with Alzheimer's Disease
“In our ability to think about something differently lies the power to make it different.”
― Marianne Williamson
Without a doubt, care giving is a difficult job and all too often it can be a lonely job too. The number one struggle care giver’s experience is lack of help and support from family. Care giving is a 24/7 job with no vacation time, no breaks or holidays. There is nothing glamorous about care giving. It is hard work, but it is necessary work. In a perfect world, when a loved one is diagnosed with such a devastating disease as Alzheimer’s disease, family members would pull together and work for a common good- taking care of their loved one. Everyone would share in the responsibility of managing and PARTICIPATING in their family member’s care. Some families do pull together in difficult times but unfortunately many do not.
In many families, there is one person whom all the care giving duties fall upon. They have been deemed the caregiver because they are married to the person needing care, or they are single, or retired, or don’t have children to take care of, or simply because they are female. Sometimes they are elected because they are the one who lives the closest to the loved one needing care. Many times this person is thrown into the caregiver role unwillingly or by default because there is no one else to take on the responsibility. Regardless of how they got there, they are now the person responsible for their loved one’s health and well being. They are now responsible for almost every aspect of their loved one’s life. They are the person who picks up prescriptions, manages medications, juggles doctor’s appointments, prepares meals, grocery shops and keeps up the house.They are the person who has to leave work to take their spouse or ill parent or other family member to doctor’s appointments or therapy sessions. They are the one’s who are called out of important meetings to come home to calm their loved one down because their loved one has becoming belligerent, demanding to be taken home and trying to leave, when they in fact are home and don’t realize it. The caregiver is the one who may need to quit their job in order to take care of their loved one. Caregiver’s are the one’s who sit vigil for hours in waiting rooms, waiting to talk with physicians regarding the outcome of their loved one’s procedures as well as their prognosis, which will dictate the next set of challenges they will need to take on. Caregivers are the one’s who must convince their loved one’s that it is time to take a shower and in the process wrangle the clothes that they have been wearing for a week away from them so they can be washed. Caregivers are the people who are awakened in the middle of the night to clean up explosive diarrhea, find lost dentures in the bed sheets or, one of the most frightening, take a late night trip to the emergency room. The caregiver is the person whom the ill family member moves in with when they can no longer live by themselves.
Caregivers give up huge chunks of their lives in order to care for their loved ones. Caregivers are the people who put their own health on the back burner in order to take care of their loved one’s health needs. They are the one person the entire family counts on and assumes will take care of what ever comes up, because they have done it for so long and so well. That fact is why the notion that the caregiver may not want to do this or would need help doesn’t even cross the other family member’s minds.
When I hear about family members refusing to help I think of the song “The Farmer in the Dell.” In the song, everyone pairs off and leaves, leaving the cheese to stand alone. That’s how most caregivers feel- like the cheese- alone. I know thats how I felt many times, when others were too busy to help, too clueless to know help was needed or just didn’t want to be bothered. Some family members simply live too far away to help. But that doesn’t mean they have no responsibility for their loved one’s care. Many family members feel they are filling their care giving obligations with plenty of “ advice and suggestions” for how YOU as the caregiver can do the job better. But usually none of those suggestions comes with any “hands on” help on their part. Not only does this add fuel to the fire of a difficult situation, it can build a wall of resentment that may never come down.
Some family members want to help and make a genuine effort to do so. Some want to help, but don’t know what to do. A way to remedy this is to ask them for what you need and accept what ever they have to offer. I think it’s important to accept what ever they have to offer, even if it isn’t exactly what we asked for because it is something and quite possibly could lead to more. Also, if we don’t ask for help, how else are they going to know what we need? From their point of view, their loved one is being cared for and everything is going along smoothly. Trust me, they have no idea what you are going through.
Even if they just offer to go to the grocery store, or sit with your loved one for a hour while you run errands or take a bath or just drive around town alone in your car because it’s the only place you can find peace and solitude- let them. It may seem like a small thing, but it is something. Accept the gift graciously. Try not to condemn your siblings, spouses, children whom you perceive to be useless or insensitive because of their lack of inaction. Instead, take a step back and try to see what’s really going on with them. Not everyone has it in them to take on the huge responsibility we as caregivers have taken on. Tenacity, perseverance, dedication, patience and unconditional love are our superpowers- not everyone has that. I, for one am guilty of downplaying family and friends offers to help. My first thought is that they really don’t mean it and they are only offering because it seems like the polite thing to do. Secondly, I feel that I am the only one who can do this they way it needs to be done. So it is just easier for me to do it myself. But in a way, isn’t that a bit egotistical? Many of us suffer in silence. And that really isn’t helping anyone. We need to speak up and tell those close to us what we need from them. Give your family a chance to help. Provide them with the information and tools that they need to step into your shoes once in a while. Even if only for one chore, one doctor appointment or one afternoon visit. It’s something and might help you not feel so alone in all this.
Anger and resentment are normal feelings in this situation.When we as caregivers spend hours, days, weeks, and in some cases- years, caring for someone that we may or may not have had a good relationship with in the first place, things can get dicey. Resentment comes from the fact that we as caregivers feel saddled with this huge responsibility and do not have the freedom to enjoy our lives like everyone else. Caregivers often feel like they are missing out on some of their most important years and the joys those years should bring. Not only do they feel like they are missing out, they feel guilty for feeling that way. After all, their loved one is dying. What gives them the right to want to enjoy life when their loved one no longer can? Feelings of anger and resentment may be normal in this situation, but after a while, feeling this way doesn’t help you or your loved one. These feelings can sap any positive energy you can muster in a situation were we need all the positives we can get.
If after you tell family members what is needed and they refuse to help, the best thing to do is move on. Don’t put anymore energy into trying to convince them that you need their help or their loved one needs their help. Move on and look for another solution. Lets face it, we can not control what others say or do or don’t do. The only person we have control over is ourselves. Each moment we spend bitter, resentful or angry is a moment wasted over something out of our control. Is it fair that we as caregivers are burdened with all the responsibility of our loved one’s care?- absolutely not. But in order to do what has to be done- we have to let go of our anger and move on. You have to believe in your self and know that in reality, the only person you can depend on is you. I found out near the end of my Mom’s life that I just didn’t have the energy to waste on people who didn’t care. It got to the point where I felt if you aren’t here to help, get out of my way so I can do what needs to be done. The last year of my mother’s life was extremely difficult. Her behavior became aggressive and almost impossible to deal with. No one wanted to be around her. Because I was still working, we employed a in home caregiver to stay with her during the day, which helped for a while. Then because of safety issues, we had no other alternative than to place her in a locked Alzheimer’s facility. Placing a family member usually creates an upheaval from other family members who feel you should do everything you can to keep your loved one in their home, especially if you promised to do so in the very beginning. (A promise no one should make because it is almost impossible to keep.) This brings on a ton of guilt for the caregiver who has to make the decision on placement. Many caregivers, me included, feel like they have failed their loved one when they can no longer keep them at home. But it’s definitely not a sign of failure. Placement is often the next step in the care giving process and is one of the hardest decisions to make. This is where believing in yourself comes in. You have to believe that you are doing the right thing for your loved one even if it isn’t the most popular decision. When others criticize, but offer no other solution, they give up their vote. It’s as simple as that.
When you are dealing with a terminal illness, time is precious. Alzheimer’s disease is a progressive disease. It’s destruction moves forward every day and nothing can stop it. Wouldn’t it be better to find as much joy in the days our loved one’s have left than drown in the misery of the situation? Granted those moments may seem few and far between, but isn’t finding some joy better than not finding joy at all? Any one who has taken care of a loved one with Alzheimer’s knows that at times, our loved ones experience tiny moments of clarity. We went through months when Mom didn’t know who we were or what was going on, then all of the sudden-it’s like a wire reconnected in her brain and she was a lucid as she was ten years ago. It only lasted a few moments- but they were precious moments. Those are the times we need to cherish and pay attention to.
Caring for someone with dementia is one of the most difficult things you will ever do. But it can be the most rewarding thing too. Everyone wants to throw in the towel from time to time. I certainly did-more than I care to admit to. There will be many times when you will feel like the cheese. Don’t be the cheese. Doing the best you can with the resources you have is all anyone can ask. There are many resources out there. ( See links below.) Once I spoke up and found people who were willing to help, it gave me the chance to recharge and gave me the strength to get back at it. Nothing is more loving than helping our loved ones on their journey in this dark and scary place find comfort and peace. It is my hope that all caregivers find comfort in knowing they are doing the best that they can with what they have and that it is enough. Compassion is the greatest gift we will ever give to our loved ones and most importantly it’s the greatest we can give to ourselves.
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