Seven
Challenges for Dementia Caregivers
1. Funds: Families with loved
ones who have a form of Alzheimer’s worry about health costs. Even if a loved
one is on Medicare/Medicaid, a need for money exists. Amounts vary with each
individual.
Our daughter is a private
pay resident in a facility. She has insurance to help with doctors, but we pay
her monthly rental fee, provide snacks, personal items, haircuts and all
medicines the insurance doesn’t cover. The amount per month is thousands of dollars.
Savings dwindle quickly.
How long can we pay these expenses?
It depends on how long she lives. Many people with this disease outlive their
monies.
If she eventually qualifies,
she might be eligible for Medicaid. However, Medicaid doesn’t cover all the
personal items one needs.
I’ve seen a few in
facilities go without necessities they need or would enjoy. Either Medicaid
didn’t go far enough, or their families couldn’t provide.
Friends and family members
can help. Take along a bottle of shampoo as a gift, or maybe snacks. I’ve seen
residents giggle with joy over a box of donuts.
2. Additional health issues: Loved
ones with dementia deteriorate with physical skills. They are prone to fall, or
choke while swallowing. Skin legions can crop up. As their body weakens, other
diseases appear such as pneumonia or breathing difficulties. There is also the
possibility of common aging difficulties such as blindness or deafness.
3. Support: Loved ones who are
in facilities have a certain amount of assistance from hired aides. Many
patients with dementia remain at home with help from families. People with vast
financial means can afford to keep loved ones at home with around-the-clock
caregivers. Most of us don’t have the monetary means to do this.
Facilities are expensive. As
a result, many people with Alzheimer’s are cared for at home.
I’ve seen people welcome
the challenge of homecare at first, but after years of giving attention, these
caregivers grow to the breaking point. As the disease progresses, taking care
of the loved one becomes a 24/7 job. Lives are absorbed by the needs of
another.
Helping loved ones who
become violent is a dangerous work, and many with this horrid ailment become vicious
and put a caregiver in danger.
A friend of mine took care
of her husband. She awoke one night to find him hovering over her with a knife.
He stabbed her. She survived and managed to place him in a facility. She was
fortunate to find a one for him.
If the person is treacherous,
most facilities will not take him/her, and the burden falls back to the family.
4. Elder Attorney: I recommend
families talk to an elder attorney. Find out the options. Ask questions. How
can my loved one qualify for Medicaid? What sort of paperwork do I need? Power
of Attorney? DNR? Will? Explore legal possibilities.
Our daughter’s husband died
while she had dementia, and her care fell to us. I went to an attorney. I discovered
she couldn’t sell or rent the house because it was in her husband’s name. She
could only live in it, and she was not capable of taking care of herself. We
had many legal issues to navigate, and the lawyer was a godsend.
5. Loneliness is a growing
concern for people with dementia. If they are in a facility, they often wonder
why they are left there, and why doesn’t someone come back to get them? They become
fearful. They don’t remember when a loved one was there—even if it was five minutes
ago. Time means nothing to them, and loneliness becomes depression. If the
loved one remains at home, I suggest Adult Day Care Programs. Before being
confined to a facility, our daughter attended one three days a week, and she
loved it. She has progressed beyond that stage now, but it was a blessing at
the beginning of her illness.
6. Abuse or Neglect:
Facilities can be neglectful. Some aides neglect because they aren’t
sufficiently trained, others just don’t care, and some are downright mean. If
your loved one is in a facility, check on them often. Pop in at odd times. Be
observant to other residents.
During this current month of
September, I noticed our daughter was losing weight. I asked the medical aide
what she weighed. The woman looked at her record and replied, “112 as of August
first.”
I said, “She doesn’t weigh
that now.” They weighed her and she was down to 99 pounds. I was seeing her almost
every day, and it took awhile for her smaller size to register.
I investigated. They hadn’t
been feeding her enough! They had also neglected giving her the smoothies. The
neglect to feed her properly wasn’t intentional, but our daughter sleeps a lot
and they let her miss meals. Her hair falls into her face, and that presents a
feeding problem.
Speaking of hair. My hubby
suggested “just tell the stylist how much to cut off. You don’t have to go.”
Ha Ha! I texted the
beautician with details for a haircut. She didn’t cut the hair as directed, and
the hair still fell forward. Sometimes, you just got to be there.
7. Change: It is a challenge
for families to adjust to changes in the family. Many at-home caregivers feel
deserted. They realize their lives are passing by and they are stuck caring for
a loved one. The loved one has adjustments, too. In the early stages, they
think they can live independently, and a battle begins. These folks will find
ways to sneak out of the house and get lost. You often hear of a “Silver Alert.”
People with dementia related illnesses can find ways to drive off in a car.
If a loved one is put into
a facility, they must adjust to new surroundings. Moving from place to place to
sets them back. This disease is a
day-to-day adjustment.
Dealing with Alzheimer’s
and Dementia is a challenge for all who are involved with it. If you are a daily
caregiver reading this blog, please seek help wherever you can. Ask someone to stay
with your loved one while you take a break. I hope you will quash any feelings
of guilt. Many of us are in this boat, and we understand. Reach out. We can
help each other.
