I am usually an optimist, but feel like we have a death sentence. I don’t know where to start to gain control over our life and I’m receiving so many suggestions. Where do I start?
Start with you. I’m a strong advocate for caregivers joining a support group led by professionals that provide literature so you to know what to expect and can offer proven simple, safe ways to handle common problems. One lady I know wore a nametag to help her husband remember her name. A gentleman got a baby monitor to alert him to his wife’s movements at night. A friend avoided asking open-ended questions like what do you want for supper and instead just made dinner and explained what was being served. Online resources can be a good place to start, but are no substitute for real people, a handshake, hug and knowing nod. Such support groups give you an outlet where you can “feel” grief, sadness, frustration, anger, and loss. These folks will understand in ways others that have not experienced what you are going through may only guess at. You will also receive gentle guidance on new ways of loving. Life is not over, but it is changing.
Second, don’t try to shoulder the load yourself. Accept help from friends and family. People want to help, but may not know how without being intrusive. They will often say, “What can I do to help?” Make a list and ask for something small that you know they could do. You will need time to run er-rands, need some meals in the freezer for a bad day, help with housekeeping now and again, and some-one to handle errands for you. Phone calls, cards, letters, and occasional visits mean a lot. If your financial resources allow, hire appropriate help as soon as possible. A few hours a week can be a God-send. Husbands often tell me how they appreciate time just to mow the grass, get the oil changed on the car, and be able to go the barbershop and bank knowing their beloved wife is safe and enjoying some time with someone else. Likewise wives often enjoy time with grandchildren, a trip to the grocery store, having the garden tended to or a light bulb changed.
From a legal standpoint you need a check up. You will need to plan for the cost of long-term care, but this does not mean giving all your money or assets away. Both you and your spouse need to re-look at health care decision-making. Previous planning for distribution of assets after your death may need to be revised. Joint tenancies, beneficiary designations on IRAs, 401Ks, and life insurance policies may need to be changed. Financial powers of attorney are needed and the attorney-in-fact may need to be changed on your POA. Beneficiary provisions in Last Wills and Testaments may need to be adjusted and a new personal representative nominated. You may also want to create a special needs trust and name a guardian for an incapacitated spouse.
With these things in place you will feel more in control and be able to focus more clearly on the needs of your spouse. Your optimism is not misplaced. It may not be too late to make new memories, take a short vacation, watch a sunset or enjoy a dinner out.