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Leslie Blog – Part 3

How Do We Know When Its Time?
Part Three of Three ~ The Lighthouse Keeper

Your Loved One is Isolated and Lonely

Living on their own, it is common for those living with dementias to self-isolate. In the beginning, aware that they may be struggling with certain things, the desire to not be seen struggling can cause people to pull themselves in. For the Caregiver, getting out with a loved one with dementia can be difficult, and there is sometimes a strong desire driven by fear of judgement to stop engaging socially as one normally might. It’s very easy for people with dementia and their caregiver to sink into isolation. Feelings of isolation and loneliness often increase the risk of depression. This is a vicious cycle.

Memory care communities have active and engaging calendars with activities that are specifically designed for people with dementia. Activities are meant to be purposeful and fun while also mitigating some of the agitation and anxiety which dementia brings.

Your Loved One Has Unexplained Physical Changes

Weight changes, changes in posture, change in gait, and mobility problems can all indicate that your loved one needs more assistance, and each could be a sign that something is going on. It may be that your loved one is forgetting to eat, or that he or she forgot they already ate and are eating again. Slow movements may be an indicator of confusion or disorientation. Memory care communities will closely monitor your loved one’s nutrition and wellness, making sure that he or she is eating well.

You Want to Restore Your Relationship with Your Loved One

Over time, as dementia progresses, you have become your loved one’s caregiver. It has changed your relationship, and now you spend more time managing their care than anything else. Enlisting support to take over the caregiving tasks that will help your loved one can give you back the ability to spend time with your person, support them emotionally, and not compromise the bond that connects you. Your loved one needs that loving hand holding acknowledgement from you, while someone else handles the professional care.

The adage ‘Less is More’ is going to apply to life more than it ever has if you are caring for a loved one living with dementia.

Keeping the details to a minimum will be your friend. This goes beyond daily decision making, picking out a shirt, what to eat for lunch, etc. It is our responsibility now to protect our loved ones from conversations and stressors that could cause them undue harm. Significant conversations after a certain point in the dementia process are just about impossible. I say just about, because there are always variables and situations that don’t fit inside the lines, and some people will do ok. However, if you find that you are getting a lot of ‘no’ answers, it may be time to shift the way we think about conversations and decision making.

Because our person has lost the ability to reason, manage their world, etc. So there will inevitably come a time that we will have to take over decision making, and this will require coming to terms with things that most of us would rather not. This is counter to everything we have ever known. It isn’t easy, but it is something that once you do it, it will ease the stress of some of the crossroads you will find yourself facing.

We have to remind ourselves that no one asked for this. We must ask ourselves, on their best day, if your loved one knew what they would be going through, if they knew the toll it was going to take on you, would they want you to be in the position you are in at the moment, managing their world?

It is very seldom that the answer to that question is yes, they would expect me to do the work no matter what. For most of us, if we could look at the situation we are facing, the things required to sustain caring for your person, I would want my loved one to have permission to do what is difficult. I would want them to get the very best care that they could. I would want them to advocate for me to ensure my dignity was preserved, but I would not want them to have to provide the kind of intimate care that forces our relationship to change from family to caregiver. I would want them to hold my hand, to hug and love me, tell me that it’s going to be ok, laugh with me, and seek moments of joy.

Would your person want to feel responsible for putting you in this position that they didn’t ask for?

We are here to support, to answer questions, and to help however we can.

With Love,

The Lighthouse Keeper