Love Care Relationships Alzheimer's
Being a caregiver, a person who gives care to those who need help taking care of themselves, sounds simple. But, the configurations and ramifications of what that might look like are almost infinite. Societal factors such as culture, economic status, gender and religion factor in to the expectations and challenges for an individual in their role as a caregiver. In addition, family structure, physical health, personality, and other roles the caregiver has, all affect the caregiving experience.
For some, their time as a caregiver can be beautiful and fulfilling, a chance to express love and help someone in their time of greatest need. For others it can be horrifying and overwhelming and take a toll on their physical and mental health to the extent that they never recover from it. And, everything in between.
As a caregiver myself, I know it can feel like there is always some kind of problem that needs to be solved. A lot of stress comes from having to make so many decisions and trying to always balance all of the things to make the “right” decision. There are SO many factors to consider: their physical well-being, their emotional well-being, their desires now, their desires before they became ill (or what you think those desires would have been if it was never discussed, or written down,) my physical well being, my emotional well-being, my desires, monetary costs now, future monetary costs, time, effort, the input and requirements of professionals, or family members, and on and on.
Caregiving for someone with dementia is even harder because you have to make almost all of the decisions without input from the caregivee. Or, what can be even harder is that you have to make a separate decision about whether or not to take the caregivees input or not. For example, for a period of time my husband’s input on most hygiene decisions was to not ever do anything related to hygiene, ever, which was not an acceptable option in this reality. Making a decision and then being met with anger or resistance from the person you are trying to help creates even more stress.
This endless balancing and problem-solving is exhausting and can bring on feelings of overwhelm, self doubt and guilt. It’s easy to carry the belief that you are supposed to find a solution, and that if you think about it enough and learn all of the things—you can get through to the correct answer.
Of course, this is an irrational belief, keeping you caught up in a hopeless quest. Dementia, terminal illness and physical incapacitation are horrible things for humans to face and while it will look different for everyone, there will almost always be times when the person you are caregiving for is uncomfortable, unhappy, scared, or in pain, and no decision you make will be able to fix that. Unfortunately, the moments when you make a decision and get to experience, “I solved it! I got it right! I feel so much better now!” will be rare.
Just the question of what medications should be given when, or withdrawn when is, I believe, at best an educated guess even by the experts. A medical specialist cannot know exactly how a medication will affect someone and which side effects might occur.
Having had multiple different caregivers and nurses in my house over a period of time, one thing I have noticed is that they all have different things that are most important to them, different opinions about what products to use, or how much of it, etc.... And these are professionals!
So how can someone who does not have any training or experience in caregiving be expected to know, which cream, which bed position, which amount or type of exercise, which food/medication/supplements to use? Yet, we as caregivers often feel the immense weight of having to make a healthcare decision that we know can have a significant impact on the well being of our caregivee. We feel like it is possible and necessary to make the “right” choice.
Then, just to make things more fun, we often have to try solve problems without all the factors being known; mathematical equations become impossible to solve when there are unknown factors. Having to make decisions when you know there is no way to know what is best, because you can’t read the future, can cause anxious rumination and paralysis.
- When will the person I am caregiving for die?
- How much money will different levels of professional help cost?
- How much money will I have left in the future?
- When will I die?
Other unquantifiable factors can further complicate many caregiving problems, things like how much guilt is felt, pressure from the expectations of others, promises made in the past, caregiver feelings of frustration, exhaustion, fear, and the health effects of stress.
So, what can you do? Here are some things I have found helpful:
- Lower expectations—Some problems don’t have to be solved. Be willing to let some things go. Being a Caregiver for my husband with dementia, I at some point realized there was a lot of stress from conflict with my husband about things he ‘should’ be doing, things like: showering regularly, communicating with others, enrichment activities, wearing clean clothes, etc. He didn’t want to do, or need to do any of these things, but they seemed important to me A helpful set of caregiving videos from Island Health gave me the simple framework: are they safe? are they clean ( I modified this to clean-ish) are they comfortable? This gave me an obtainable measurement to be ok with, rather than an ideal of how I wanted things to be.
- Don’t micro manage—Maybe you don’t have to be the one to solve all of the problems. If you have other professionals or family members helping you. Let them do their thing, even if it is not exactly what you would do, or want. As long as the person they are caregiving for is not unsafe, or being mistreated, let it go. If you have data that a medication or treatment is making things worse, by all means speak up, but spending hours on the internet trying to decide whether to try a recommended drug is likely just taking more of your resources with no payoff. I regularly see people asking about medications on Facebook groups and there is inevitably someone who used it and had wonderful results and someone who used it and had terrible results. There is nothing wrong with doing some research and being informed, but know the limits of what is being informed and what is fruitless searching for a clear answer that does not exist.
- Acceptance:— Some problems can’t be completely solved. Accept that there is no perfect solution. The person you are caregiving for did not have a perfect life before they needed caregiving and they will not have one now, and that is not your fault. Even if you somehow made every perfect decision, in almost all cases the person you are caregiving for is still going to be unhappy and uncomfortable in some way. Making yourself sick/exhausted/chronically anxious trying to make the situation the best it possibly can be actually just makes a bad situation worse, because it compromises your ability to function, especially over a long haul.
- Thought Management—Over thinking about a problem rarely solves it more quickly or efficiently. Because there are many stressors when caregiving that you have no control over, it’s important to manage as best you can the ones you do have control over. So ask yourself, am I making more stress for myself in my head? Work on being aware of your thoughts: are you ruminating over decisions you already made? Beating yourself up over something that didn’t work out? Obsessing for much too long over a decision that needs to be made? All of this over thinking does not actually help you make better decisions it just increases your stress, which makes almost everything worse. I know, of course, that this is easier said than done, but just becoming aware of your thoughts, as thoughts and not reality, can help. And then find something else that works for you: journaling, talking to supportive friends/family (if you can find them), an online support group, or finding a professional to talk with. Or, maybe it’s mindfully resetting with loud music, a funny show, hitting golf balls, or a brisk walk.
Every caregiver’s experience is hard, but in different ways. If you can find small things that you do have control over that can make your day a little easier, it can make the weight of all those decisions a little more bearable. It’s important to remember that your physical and emotional well-being has to be part of the equation.