“You’ve got this”: A guide for when your parent has a dementia diagnosis

Remember those clichés our parents used to say to us when we were kids?  Those comments were loving, wise, scolding, positive, negative, witty, scary or just plain didn’t make any sense to us at the time. Here’s a few clichés heard growing with some tips to guide you in support of a parent living with dementia.

  

 Getting the diagnosis

‘It’s ok to feel your feelings” How do I feel with mom/dad’s diagnosis of dementia?

“Your parent has dementia.” People react to the news of a diagnosis in various ways. Take your time to sit with your feelings and what the news of this diagnosis means for you as a caregiver to your parent.

Denial. When hearing your parent’s diagnosis, you may think, “Not our family — the test results must be wrong” or “Do I turn and run?” At first, denial may help keep you from getting overwhelmed. It lets the truth sink in little by little as you’re ready.

Fear or anxiety. It is scary to learn Mom or Dad has dementia. What will the future hold? How will this affect me and my own family? What if they forget who I am? Learning more will help calm your fears and the myths about dementia.

Anger. With news of the diagnosis adult children often think, “Why me? I didn’t sign up for this.” It’s normal to be angry or resentful. Dementia is not something we are prepared to deal with it nor did we want this for our parent.

Sadness. People often go through a period of sadness after a diagnosis of dementia. You once saw your parent as a vibrant and healthy person and, now may need to grieve the loss of the “old” (pre-diagnosis) image of your parent.

All these responses are normal. For most people these feelings will ease with time. It’s also normal, however, for these same feelings and fears to come up several times throughout your dementia care journey.

 Learn about the disease

 “One day you will thank me”  What do I need to know?

Dementia is usually a slow process, and the changes ahead will also probably come on slowly. You have time to learn about the disease, how best to support your parent living with dementia, planning and how to take care of yourself.

Learning what you can about dementia and how it progresses may help you adjust to the changes that you are observing, and your parent is experiencing. The changes are because of the dementia and not their fault. Some of what you learn may be staggering. Learn only as much as you feel you can. A health care practitioner and your local Alzheimer Society are valuable sources of information.

Join a support group for family members and/or adult children of those living with dementia. You can benefit greatly from the learned experience of others who understand your situation.

Behaviour and communication

 “If you can’t say anything nice don’t say anything at all”  Can Mom or Dad control their behaviour?

Mom or Dad may look like they always have on the outside. Their behaviour, however, may be very different, and might even be described as irritating and/or challenging behaviours. It’s not unusual to think their actions are deliberate, are being done on purpose and personally directed toward you. While it might feel like it is so, this is not actually the case.  That is, it’s not personal.

Dementia is an invisible disability that can’t be seen from the outside. Dementia physically alters and damages the brain, which can affect personality, mood, behaviour, decision-making, and judgement.

Knowing and understanding that it’s the disease talking can be helpful. From this perspective, the sting of hurtful accusations is minimized, you learn to take things less personally, and if you’ve heard the same information or question repeated over and over again, you get to practice patience.

“What part of NO don’t you understand?” What can I do when a parent refuses help?

If you’re helping your Dad or Mom with a daily life skill (such as, for example,  shopping, paying bills, personal care, meal planning etc.,) and they get upset, it can help to stop and take a step back.  Refusing your help is possibly rooted in fear of losing control and independence. It can make a big difference to step away and calm down rather than butting heads which will make the situation worse.

Take for example having a shower. If you tell Mom it’s time for her shower and she refuses (or tells you she already had her shower), chances are she will dig in her heels if you keep insisting she have one. She may even start yelling and pushing you away. Give her some space and come back to her in a little while.

When you come back and approach calmly, Mom may be more cooperative and receptive to taking a shower. If unresolved, this may be a situation where you choose your battle, walk away and it pass it on to another day.

“Don’t you raise your voice at me” Is it a waste of time to argue with someone who has dementia?

Dementia causes your parent’s brain to malfunction. The brain’s social filter and impulse control centre may fail, and you hear words or statements you never dreamed your parent would say. Things they say can be fabricated and clearly untrue or the information is so jumbled it doesn’t  make sense to you.

It’s frustrating to hear things that are false and only natural to try to correct your parent. But that will only lead to both of you squabbling or getting upset. And you simply can’t win an argument with someone who believes what they’re saying (because that’s what their dementia brain is telling them). Best to avoid correcting, insisting, using reason or logic and arguing the fact with your parent if you both want peace of mind.

“You better not be lying to me!” Do I lie or tell the truth?

Using therapeutic fibs to respond kind-heartedly.

There are valid arguments on both sides of this issue. It is an ethical dilemma often faced by adult children when their parent asks questions that may leave them unsure about whether to answer honestly. Trying to get a parent to join your reality rather than their reality usually causes confusion, anxiety, fear, and anger.

The idea here is that therapeutic fibs can benefit the caregiver and person with dementia by reducing stress. The motive for fibbing is seen as comforting your parent and sparing them unnecessary distress. When placed in this context, your motive to “lie” is an act of kindness rather than one of deception. Validating their concept of reality helps you and your parent feel calmer and happier.

Self care

“You don’t have to be the best at everything; you just need to try your best.” Manage your expectations and let it go.

Because you care so much and worry about your parent, you want to do as much as you can, as perfectly as you can, anticipating all their needs and ultimately feeling responsible for their happiness. But holding yourself to those standards and unrealistic expectations may cause frustration, resentment, and exhaustion which may lead to unwanted caregiver burnout.

Instead, manage and safeguard your mental and physical health by picking your battles and not sweating the small stuff. How important will that thing be in the next 24 hours, week, month, or year? Choose the top care priorities and let the less significant things go.

“Go play outside! It’s a beautiful day!” Take a little time to enjoy …

When you focus all your attention on your parent and miss carving out “me” time, the stakes are high for stress. That’s not good news for you or your parent. You may not be able to take hours for yourself each day but you’d be amazed at how effective short breaks can be. Whether it’s breathing mindfully for 1 minute, 15 minutes talking to a close friend, or one half  hour outside walking or gardening, take a little time to enjoy doing something for yourself. Engaging in short pleasurable activities will help re-energize you and reduce your risk of burnout.

Planning for the future

“We’ll cross that bridge when we get to it.” What does the future hold?

Planning for the future is one of the positive steps you can take to cross that bridge and prepare for the challenges that having a parent living with dementia will bring. Topics to discuss with your parent are:

• Money and legal matters
• Living arrangements
• Healthcare and personal care planning

This advance care planning -speaking about these matters early on in the journey- gives everyone an opportunity to bring their concerns out into the open and develop some solutions. This can help to reduce potential conflicts in the future. This future planning also sets it up for you to make decisions that will respect your parent’s wishes and needs, and honour their personal values and beliefs, as the disease progresses.

 Final Thoughts

 So go ahead, take the advice and try out these tips. Why you may ask?

            “No one said it was gonna be easy” and “Because I said so!”