Dear Lighthouse Keeper,
My wife is living with dementia and I would like to keep her at home for as long as I can before we consider a move into a community setting. Someone at my support group told me that I shouldn’t wait. How do I know when its “time”?
Sincerely, A Struggling Spouse
Thank you so much for asking the question. It might not feel comforting but I assure you that this is one of the most common struggles for spouses who are caring for their loved one who is living with dementia.
There are a few things to consider when asking yourself this question. We’d like to preface this by saying that it is a very logical approach to a very personal and emotional decision.
- By deciding to keep your loved one at home “as long as possible” you are increasing the risk of something happening not only to them as they progress in their disease, but to you as well. Since we aren’t the resilient young bodies that we used to be, trying to provide the kind of support that we so badly want to for our loved one can take a devastating toll on us. As much as we love our ‘person’, what if something happens to you, can your spouse call for help? Who will take over the care that you are providing, do you have a plan?
- Shifting our train of thought: As your loved one begins to shift into their disease process and their needs continue to increase, consider getting them settled somewhere that is designed specifically to help them through their day. As they change, the expert staff can anticipate their needs and keep them safe and feeling comforted. The other benefit to this approach: you can to take care of yourself, and be the supportive spouse/child/loved one that they need you to be.
- It can feel counter-intuitive to think that it is ok to ask someone else to provide the type of care necessary to those living with dementia. It may help to ask yourself if your spouse were their best-self on their best day, would they ask you to do the things they need, or would they give you permission, even if it feels so scary, to GET THEM the best help you can and ask you to comfort them as the loved one you are?
- So many people living with this disease are silently struggling and you may not be able to tell. Its human nature to want to be strong for loved ones surrounding you. This can be exhausting, keeping up the charade. This usually manifests in agitation, increased anxiousness, strange sleeping routines, things that we look to find solutions or explanations for, when likely, I’m exhausted from trying to be who you want me to be.
- Enlisting the help of experts sooner will help to ensure that their preferences are honored as the disease progresses, which will help guarantee the comfort of your loved one.
Please know that although this is one of the hardest decisions you may ever make, the hardest part is making the decision. Be gentle with yourself, and with your loved one. No one asks for this, and it definitely isn’t what anyone had planned.
Some Tips to Help Keep Moments Meaningful
Never Argue, Instead Agree. Never Reason, Instead Divert. Never Shame, Instead Distract. Never Lecture, Instead Reassure. Never ask “Do you Remember”, Instead Reminisce. Never Say “I Told You”, Instead Repeat/Regroup. Never say “You Can’t”, Instead, Do what they can. Never Command/Demand, Instead Ask/Model. Never Condescend, Instead Encourage. Never Force, Instead Reinforce.
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The Keeper of the Lighthouse