Caregiver burden: what to do when a loved one has dementia

Caregiver burden: what to do when a loved one has dementia

Pat M. Irwin helps us to understand the stages of grief one may go through when a family member develops dementia, discussing how to better cope with such a sensitive situation: "I hope this helps some of our readers. I wish someone had told me this when I was going through this with my darling dad...” Pat  is an Eldercare Consultant and President of ElderCareCanada, one of the experts at SeniorsZen.com’s Ask the Expert section.

By Pat M. Irwin, BA, AICB, CPCA

My dad, 85, is a darling; he is at home with my mom and has some mild dementia. She has announced she’s ‘burned out’ and wants to put him into a home!” - said a message from a client looking for advice.

You are not alone, my dear. Many people go through this dilemma. Your are right to seek advice, since this is a very complex issue. Let’s understand what might be going on and discuss how to better deal with this situation.

 

The Stages of Grief

The five stages of grief were defined in the 1970’s by Dr. Elisabeth Kübler-Ross. Although they are usually associated with bereavement, they apply to any unwelcome change in a person’s life. Let’s look at each one and see how it might apply to your situation:

 

  1. Denial

Both your parents may be in denial, in different ways. Stoic men may dismiss symptoms and cleverly compensate for deficiencies with reminder techniques and self-cueing to manage most of their daily activities. Your mom may be trying to explain-away behavioural changes in your dad, dreading the word ‘dementia’ and all it entails. She may even feel that dementia is shameful or too embarrassing to even acknowledge.

The best solution to denial is knowledge. Check out the numerous reputable dementia websites and forums such as the Alzheimer’s Society of Canada or Dementia Friends  for facts about the disease, coping techniques and sources for support.

 

  1. Anger

It’s natural to feel anger, frustration and sadness when a disease such as dementia gradually steals your loved one away. It affects not only the patient, but their family and friends, and ‘the tyranny of the invalid’ often results, where everyone has to cater to the ill person, causing resentment. Unresolved anger can even lead to elder abuse, and certainly contributes to caregiver burnout.

The key to managing anger is to be able to express it in a safe manner. Information forums such as those in the sites mentioned above can help the patient and the caregiver feel less alone. Talking to a the family doctor, a trusted friend, your clergy or a professional therapist is a great help. It is not shameful or wrong to feel angry! Acknowledge it and give yourself some help to cope.

 

  1. Bargaining

Bargaining, such as ‘if I just do this, it’ll all be OK…’ is part of human nature. In the ‘Dr. Google’ world, we’re always looking for the quick-fix solution.

Bargaining can be helped by getting a professional diagnosis. Take your dad to the family doctor, who can do some simple cognitive tests as a baseline. The doctor may refer you to a neurologist and may suggest medications such as Aricept which may delay the symptoms for a while. Knowing that the diagnosis is, in fact, dementia is a bitter pill, but it helps you all move on in the same direction.

 

  1. Depression

Depression at learning that you have a progressive neurological disease is only natural! Once again, knowledge is key. You can’t fix the disease but you can investigate the numerous methodologies and treatment plans such as the Eden Alternative or The Montessori approach.

Research your community’s services for seniors and find day programs, retirement or nursing homes that have programming to help your dad make the most of the cognition that he still has. Check out respite stays at your local retirement and nursing homes to schedule caregiving breaks for your mother. Make a plan, then follow the plan – it will make you all feel much more in control.

 

  1. Acceptance

Acceptance is the goal of any life change. It's not easy but here are some ideas:

  • Enlist your siblings in the facts about the diagnosis, treatment choices and plans. Don't stress your mom by disagreeing among yourselves! Being a consistent unit will help your parents and your ongoing relationship with each other.
  • Help both your parents. It’s easy to just consider your dad, ‘the patient’. Acknowledge your mom’s difficult role, support her with breaks, taking a caregiver shift, arranging hired help or respite arrangements. Take your dad out, or even overnight. Sometimes just listening is a huge help to the caregiver.
  • See your parents for who they are now. You are used to your parents as a partnership; now one of them is more vulnerable and the other needs your support. Their roles have changed and without ‘parenting’ them, you need to ‘partner’ with them. They’re still your parents, after all.
  • If you do a respite or permanent placement, or hire a caregiver, find ways to help your dad adjust, using knowledge of him that only you possess. Create memory books with your kids helping; get his favorite music and an easy-to-use CD player; outfit his room the way he likes it. Schedule outings with his pals and be his ‘best friend’. Introduce the staff to his hobbies and preferences.
  • Help your mom, and each other, with the inevitable guilt. It's no one’s fault this has happened, so don’t be judgmental or let anyone feel they’ve let your dad down.

No, you can’t fix your dad’s life or turn back the clock. But you can get through it as a family by staying on the same page, moving forward together and supporting each other.

 

 

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