How can I survive my husband's Alzheimer's?
He is 76, hes had on set dementia since I married him at age 44. His doctor says he can tell he doesn't have Alzheimers after talking to him for 5 min. So he quit using his patches, he is deaf, refuses to wear his sate of the art hearing aids or his glasses. He really processes no instructons of any kind. I have no family to help me, His boys do not know, but never visit even so they do not observe. I am MAD, all the time, I don't want this burden. I can't do it.!!
You cannot do it alone. Please do not stay isolated - seek out help. There are lots of sources of assistance - try them one by one and find the ones that work for you.
You can contact: your Area Agency on Aging; AARP if you are members; a geriatrician or gerontologist rather than a family physician (call your regional hospital for a referral, and at the same time ask about elder evals - both physical and mental. They are the ticket to many services you cannot access without a formal eval and diagnosis.Your husband may be more willing to have an eval if you do so at the same time.); Your state Representative or Senator's office may be able to help you with resources.
Find and attend a support group for caregivers - thru the local hospital, a nursing home, or the Alzheimer's Assoc - you need to hear what has worked for others as well as to have a place where you can share your frustrations and know people understand.
Go to a lawyer who is well versed in elder law and get all the paperwork you need in place - as well as making sure you know your rights as a spouse under your state's laws.
The "boys" need to know what you are dealing with - and the prognosis for their father's future. If they have been uninvolved, now would be the time to find out if they are willing to care for their father at all. If not, YOU need to make informed decisions based on what is possible for you to do alone, and what is best for your husband and YOURSELF.
Look into all the options: respite care? day-to-day care in your home? senior daycare? You need a break on a regular basis, to maintain your own health and sanity. Is a move to a lifetime care facility that offers leveled living arrangements a possibility?
Recognize that this means a lot of change - and a lot of losses involved. You might want to find yourself a talk-to person - whether clergy, a trained layperson (Stephen's Ministry is available at a lot of churches), or a professional mental health provider familiar with caregiving issues. Having someone to talk to about what you are feeling and the choices you are having to make can help a lot to make the burden lighter.
I hope this is helpful - and that you follow up on at least some of the possibilities. Having a demented spouse is never a happy thing, but it can be made much less maddening if you have the help that is available.
I know so well how you feel. My husband's doctor was no help either. Believe yourself and trust your feelings. You CANNOT do this alone. I have a helper who comes on weekdays to be with my husband so I can get out and it is still extremely difficult. There are excellent books to read and give to family members. One good one is "Loving Someone with Dementia" Another is "The Thirty Six Hour Day" and "Creating Moments of Joy". Find a doctor who specializes in dementia and go to him yourself. He can help you manage your husband and his illness, join a support group! You do not have to go through this alone. You will get sick yourself if you try to do that.
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