Dear Family Advisor
I'm sick, and my greatest fear is what will happen to my wife, who has dementia, when I die.
Last updated:February 18, 2010
My wife has dementia, but she lives with me. We do okay. My problem is that I've been diagnosed with malignant melanoma. It's aggressive, and I'm doing all I can to stay alive for her, but I can't stop worrying. She'll be lost without me.
Our only son lives in Hawaii and is in the military. He's married, and I can't expect him and his wife to care for my wife the way I do. I've checked out care homes nearby, but I worry about how she'll do. I haven't told our son about my illness. All I can do is imagine the worst-case scenario -- that I'm not here to care for my darling wife. What do I do?
I'm so sorry about the troubles you're facing, and I'm touched by your deep love for your wife. Many caregivers share your concerns -- what happens if they're not there to protect and care for their loved one? All you can do is make firm plans, draw your family near, and refuse to allow the worry to consume you. Missing today because you're worried about tomorrow isn't a good trade.
One thing I know about men is that when they see a problem, they want to fix it. But not everything in life is fixable. As much as you'd like to, you can't be your wife's everything. It's time to reach out to others, including your son.
You can't help but feel scared about your wife's future. You love her so much and know her needs so well that the thought of leaving her vulnerable devastates you "“- yet you're going have to tame these overwhelming anxieties because they'll cause you to make hasty decisions or paralyze you. Work to separate your emotions from what you can actually do to make sure that she's cared for as well as possible.
You need someone who can make decisions if the time comes when you can't. As scary as it is to face your own mortality, this is a tangible way to express your love for your wife -- by making sure she has a good advocate after you're gone and by giving that person all the necessary documents and information to continue caring for her (and you, if need be). Study the basics of estate-planning documents to make sure your paperwork is in order. Get these documents ready now -- before there's a crisis. This is the best way to ensure your wife is cared for in the manner you desire.
Regardless of whether your son is the person you give your powers of attorney, I encourage you to share your news with him. He needs to know. He'll need time to adjust and deal with his own shock and grief, and he'll likely want to spend time with you and his mom and find ways to help.
Share with him what you'd like to have happen regarding his mom's care as well as your own. If you feel she would fare best in her own community, it would be smart for you and your son to visit some local facilities together. If he can't join you, you can research them and tell him which is the best. The more he knows, the easier it will be for him to follow your wishes. He may want his mom to move to Hawaii if you stop being able to care for her, or he may suggest another arrangement. Consider his ideas. Involving other family members often means compromising. If he loves his mom and will do his best for her, try not to be rigid about where that love and care takes place. She could do better in a new environment than you think. I've seen many people adjust to fresh surroundings, much to their loved one's surprise.
Try to reconnect with other relatives, friends, neighbors, and community members, too. We get so wrapped up in day-to-day caregiving that we stop calling and reaching out for help. We become the only ones who know the details because it's difficult to work with others, and in some ways, it feels good to be needed. Surround your wife with people who will support you and her during this difficult time and who will continue to reach out to her in the future.
I hope you'll also reach out to a trusted friend or advisor -- someone who can help you brainstorm options and work through your stressful emotions.
What will happen in the future, no one knows. All you can do is get everything in order and then spend your days in peace with those you love. Stewing in a myriad of bleak scenarios is fruitless and will rob you of the here and now. This may be what it takes to come together as a family -- reaching out and asking for help -- and that's usually a good thing.
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