Seven Challenges for Caregivers

 

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.