Where do I start sorting through providing care for my husband with dementia?

2 answers | Last updated: Oct 26, 2016
A fellow caregiver asked...

My husband was recently diagnosed with dementia. We aren't even sure which kind yet. He seams to be getting worse very quickly. I'm already worn out and frazzled down to just a mere shadow of who I once was. I'm trying to work to keep us afloat financially. I'm scared to death. I don't know where to turn to get help and information on "spending down" assets; or even on how to not be so exasperated by his new behaviors. I feel lost, alone, afraid, and totally burned out. Where can I turn to speak to people that have gone through this and know what it is like. I feel as if I live in OZ.

Expert Answers

Helene Bergman, LMSW, is a certified geriatric care manager (C-ASWCM) and owner of Elder Care Alternatives, a professional geriatric care management business in New York City. She consults with nursing homes and daycare programs to develop specialized programs for Alzheimer's patients.

Family caregivers often express that the period following the initial diagnosis of a loved ones dementia is the most stressful time. Some say it is 'surreal' or like an out of body experience-or as you say, "living in Oz". As they struggle to learn all about the disease and embark on long term care planning, they simultaneously are coping with the patient's cognitive and behavioral changes. And often, like you, they have work and other family obligations. The initial challenge for you is to prioritize the issues and then to address them one by one. Attempting to confront them all at the same time can be too overwhelming.

The Alzheimer's Association (http://www.alz.org)is a national organization with local chapters. They offer extensive resources including educational sessions and support groups and most local chapters try to schedule meetings for working caregivers. Topics include financial planning along the entire continuum of care and strategies for behavioral management. Each chapter is able to tap local medical, legal and psychosocial resources as guest speakers. The support group will provide you with a confidential setting to be with other spouse caregivers experiencing what you are going through.

The "36 Hour Day" by Mace and Rabins is an indispensible guide for caregivers. Its Third Edition further expands information on day-to-day living with Alzheimers and delivery of care in today's marketplace. The internet also offers many websites for information and purchasing of adaptive equipment (http://AgelessDesign.com).

Sometimes, businesses offer employee assistance programs. If you work for a large company, you may be able to secure some support or referrals at the work place. If your spouse is a veteran, you can also secure benefits and resources.

The guiding principle for Alzheimer spouses is to reach out to others- friends, family, local resources- as much as possible to be able to make better informed decisions in the future and to lower caregiving stress.

Community Answers

Willam parker answered...

I want to state facts re: my wife's Alzheimer's and hen ask a question. She has had the disease for about seven to eight years, and has been professionally diagnosed, and of course the disease has progressively gotten worse. She is on the medication - Namenda. She is still at home. The worse thing I face at the present time has to do with her incontinence. However, it is not directly the incontinence, I understand she can not help this.

It is her stubbornness about putting on her Depends. She either completely refuses to wear them or can take up to an hour or more walking around or sitting, holding the Depands and saying, rather defiantly "I AM putting on my panties." You can imagine what the results are of this behavior. On the other hand when we are going out, say to eat, which she likes to do, she can put on her Depends in seconds. She has, though out life, been strong willed which is not always bad, in fact at times important and right.

Lately, I have been putting on her Depends: "put your right leg in, now your left"¦" this seems to work. I Don't know how long this will last. She still wants a degree of independence and I don't want to take that away any more than necessary. She displays similar behavior with dressing. While she can get very defiant and somewhat irritable when I tell her she needs to put on her Depends, etc., she is generally not too much like that. In many ways she still has her sweet spirit.

Could someone give me some idea how to deal with this problem? The problem stated above is VERY frustrating and causes all sorts of problems.