The Long Quiet

Bill, thank you! i’m in the same boat but not as far along as you in this trip. your comments are extremely helpful to a lot of us and help us remember that we are not alone.
Thank You again!
Dan

My God, I hear you and am experiencing much of the early stages of all the silence. I read and keep a journal to vent my feelings and thoughts. God love you.

Is there any way you could put your wife in Memory Care? What you're going through is absolutely dreadful. Your wife isn't aware of what's going on around her and she may not even recognize who you are. Don't be a martyr when it destroys your life and mental health and does her no good. Let the nurses change her diapers and make sure she eats. The French have a saying--"sauve qui peut" (save [himself] who can). There are lifelines out there. Grab onto one.

@pamela78
At $15,000.00 a month in Washington state it’s a tough decision for many of us.

Paid caregiving is very expensive almost anywhere. Here in California I pay $34/hr to have a caregiver in the bedroom with my husband with moderate dementia from 11pm to 7am. and 4hours during the day once a week. My weekly bill is around $2,000 or $8,000 a month. I have to get quality sleep in order to stay sane and healthy. They report that he gets up 2 or 3 times a night to go to the bathroom or wander the house. Their primary responsibility is to keep him from falling. This year he has had a cracked vertebrae, rib and subarachnoid brain bleed all resulting from falls. I am grateful that we have the resources to do this. My heart goes out to those that are not able to afford paid caregiving. I don't know what I would do if I couldn't get any sleep.

@pamdg Wow. I'd say so! My expenses are much, much less than that. This is an awful situation for too many .

Hi @bill2001,
I've decided that when I can no longer manage my husband at home, I will place him in a Care Home. In Hawaii, Memory Care is over $16K a month.
There is a process for spending down and getting Medicaid for a loved one. Some resources are:
State/or County Medicaid Office,
Local Office on Aging
Medicaid Planning Specialist/Elder Law Attorney
Social Worker or Case Manager with a clinic or hospital
Alzheimer's or Dementia Association.
I got tired of simmering in isolation and determined to break it, by going to a monthly Alzheimer's Association Support Group. Now, through our County's Office of Aging, my husband is going to an Adult Care Center twice a week for three months, as a kind of trial. It also has numerous resources for caregivers. It's been a little difficult for him and we're trying to tweak it to make it work for both of us. I hope that when the trial is over, he'll continue to attend the day program, maybe three days a week.

This is an "interesting" development in our modern society: care for old people. It mirrors our past concerns with childcare and the much discussed need for subsidies for families. A similar dilemma exists for the families of those with dementia: when care is so expensive, only the rich have options. Everyone else is either forced to spend a lifetime's savings and/or investments in order to be reduced to what is essentially poverty, turn to insalubrious care homes or private caregivers, or turn their elder out onto an ice floe. Our nation has myriad problems, almost all of which require substantial funding, so "Houston, we have a problem."

I find that it is heartbreakingly sad that the most vulnerable people in our country, infants, children, pregnant women, people with disabilities and immigrants trying to better their lives for their children are at the bottom of the priority list for the current government of this country while those who have so much money and power get the most attention. Something is very wrong with this equation.

When your loved one reaches stage 6 or 7, Hospice can be helpful. I am a Hospice volunteer who does caregiver relief. It’s worth looking into. Hospice is especially helpful in the final stages, or what looks to be the last 6 months of any disease including dementias.