August 3, 2016
“People who know little about dementia do not understand the all-encompassing stress of being a caregiver. It is too much.”
Those powerful words come from family caregiver Barbara, who cared for her mother with dementia until she passed away a few weeks ago. In this issue, Barbara shares her story—and the way in which a home care grant relieved the burden.
Mom Moves In
Barbara was pursuing a college degree when her mother was diagnosed with dementia late last year. When the caregiving burden became too much for her mother’s husband to handle, Barbara moved her mother into her own home.
“I had a lot going on in my life, but having my mom quadrupled that,” Barbara says. “Suddenly you have to take responsibility for every aspect of another person’s life: financial, legal. You have to be their health advocate. It takes a lot of stamina to get everything done.”
And, of course, family caregivers also have to provide the daily assistance their loved one needs. Providing care to a parent or spouse with a chronic disease can consume every second of your day. It can become hard to find the time to take a moment for yourself. Being stretched so thin can lead to guilt because you feel you cannot be all the places you should be, doing all the things you should be doing—especially if you have no other family members to help you, as was Barbara’s case.
Grant Program Gives the Gift of Time and Money
Several months into her caregiving journey, Barbara heard about the Alzheimer’s and Dementia Care Relief Grant Program , a project of Home Instead Senior Care®, Hilarity for Charity and the Alzheimer’s Association. “I belong to a closed group on Facebook for Alzheimer’s caregivers, and it mentioned the grant program so I thought I would fill out the application,” Barbara said.
The grant program awards caregiving grants to families throughout the U.S. and Canada in order to give them support and rest. Tapping funds raised by Hilarity for Charity, an initiative spearheaded by comedian Seth Rogen and his wife to raise money and Alzheimer’s awareness, the grants offer free professional caregiving services through a local Home Instead Senior Care franchise.
“To be honest, I forgot all about the application after I submitted it,” Barbara said. “Then, a few months later, I heard I’d received an award for 25 hours of care per week for 52 weeks. I called my local Home Instead Senior Care office to arrange it.”
While the award is financial in nature, perhaps the greatest benefit it confers to caregivers is the gift of time. “Receiving the grant freed me up to leave the house, because Mom was at the stage where she couldn’t be left alone,” said Barbara.
The First Thing Barbara Did with her Free Time
Barbara’s mother could not be left alone for any length of time, due to the severity of her dementia. That meant Barbara had to provide 24-hour supervision, with no time to take care of her own needs. She couldn’t even take a few minutes to tend her yard.
“The grant affected my quality of life tremendously,” Barbara said. “The first thing I did was take some time for myself. If I wanted to go down in the yard and do something for a while, I could do it. If I needed to run down to the post office, I could do it.”
The grant also benefited Barbara’s mother by providing social stimulation from someone other than her daughter. “I think the biggest benefit for Mom was the fact she had interactions with someone different from me,” Barbara said. “Just knowing there is someone there who will hold your hand and care...that means a lot [to people with dementia].”
A Multitude of Practical and Emotional Benefits
Barbara wanted the caregivers to focus strictly on her mother, so she “struck a deal” with them. “I told them I would take care of the housework as long as they would take care of Mom. And they were really good at it,” she said.
A Home Instead CAREGiver℠ provided by a local Home Instead Senior Care office through the grant program can perform a range of practical and dementia-specific tasks for you and your loved one. These professionals can offer patient, empathetic help with personal care, cooking and light housekeeping, but they can also stimulate your loved one’s mind with engaging activities, and they knowledgeably manage the changing behaviors and personality traits that can accompany a disease like Alzheimer’s.
Additionally, CAREGivers can provide emotional support for family caregivers, especially when the end stages of the disease arrive.
“It is so hard to watch a loved one waste away,” Barbara said with a catch in her voice. “After Mom went on hospice and stopped eating...she just got so thin and looked so terrible. I could not bear to take care of her at that point. It was priceless to have someone else do it.”
When your loved one enters the end stages of a chronic disease, you should not be expected to maintain the detached demeanor of a caregiver. You should be allowed to simply be the grieving child or spouse. The services provided through the caregiving grant allowed Barbara to do just that.
How to Apply for a Respite Care Grant
If you or someone you know could benefit from the assistance of a respite care grant, please take a few minutes to apply. There is still money to be awarded, and grants are made on a quarterly basis. Simply visit the application page and fill out the form. You might qualify for one of these grants:
1. Year Long Grants - 25 hours of in-home dementia care per week for 52 weeks
2. Mid-Length Grants - 15 hours of in-home dementia care per week for 52 weeks
3. Short Term Relief Grants - One-time 25-hour grants to be used within calendar year in hourly increments agreed upon by you and your local Home Instead Senior Care office
“I highly recommend the grant program,” Barbara said. “I know I don’t ever want to go through this journey again, but having professional caregivers really helped lighten my load.”
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