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Placing a loved one in a care facility : Overcoming caregiver guilt

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By Michèle Sirois, animator at Ère Libre, MAtv and collaborator at the University Institute of Geriatrics of Montreal.

Imagine what would happen if every single caregiver in Quebec stopped offering their support. To replace them, we’d need to hire 1.2 million full-time professionals, increase the capacity of care facilities by 34% and expand home support by 116%. Needless to say, caregivers have a lot of work on their hands.

 

On November 21, 2019, Dr. Doris Clerc, a geriatric psychiatrist at Montreal’s Geriatrics University Institute (IUGM)(1), gave a conference at the Amphithéâtre Le Groupe Maurice on the experience of caregivers from diagnosis to institutionalization.

During her presentation, Dr. Clerc was joined by a caregiver who had spent the last six years caring for his wife, who has Alzheimer’s disease.  The caregiver’s presence and his touching story gave the audience insight into some of the less well known aspects of the caregiver’s role.

 

Doing everything

When he is asked “What does a caregiver do?”, his reply is simple: “Everything! That includes cooking and helping with eating, assisting in the bathroom and with bathing, making sure they take their medication, organizing treatments and other activities, going to doctor’s appointments and maintaining the home.” And as the disease progresses, the needs only grow larger.

 

A psychological burden

Studies and statistics on the topic typically only look at the physical aspects of caregiving. According to Dr. Clerc, this paints an incomplete picture of the challenges surrounding the caregiver’s role. Alzheimer’s disease, for example, typically presents psychological and behavioural symptoms. The patient may become restless and aggressive, or depressed and irritable. They may experience paranoid thoughts. This makes the caregiver’s job much harder.

Often, repetitive questioning by the loved one can exasperate even the most patient caregiver. And when the patient loses their ability to speak, the caregiver must act as a detective and try to understand what their loved one is trying to communicate.

Finally, uninterrupted sleep becomes a thing of the past. Caregivers have to keep an eye open for wandering behaviour or comfort their loved one in the middle of the night.

These demands can easily overwhelm the caregiver.

 

When the relationship changes

The changes that occur with Alzheimer’s and other forms of dementia invariably lead to a change in the relationship between the caregiver and their loved one.

The patient’s memories gradually fade and the shared history you’ve built together erodes a little every day. Eventually, the caregiver loses their role of husband/wife, brother/sister or son/daughter and assumes the task of personal assistant. According to the caregiver who accompanied Dr. Clerc, that is one of the most heartbreaking aspects of the role. In his words, “I lost the love of my life.”

 

Multiple stressors

Dr. Clerc summarized the various types of stress experienced by caregivers:

Physical stress : For example, managing your loved one’s deteriorating health.

Emotional stress : For example, managing your loved one’s behavioural, emotional and cognitive challenges.

Relationship stress : For example, managing your own emotions.

Social stress : For example, losing contact with family and friends because you are too busy taking care of your loved one.

It is easy to understand why caregivers are at risk of physical illness and depression. Loss of appetite, insomnia, anger, fatigue and isolation are all signs that the caregiver may no longer be able to cope with the situation.

 

A difficult decision

Not all caregivers have the same experiences. A number of factors come into play like age, health and the type of dementia the loved one is suffering from. Is the caregiver still working or are they retired? Do they have a solid network of support, or are they isolated?

Whatever the answer, in nearly all cases, a day eventually comes when the amount of care required is too much for an exhausted caregiver to handle.

That’s what happened to Dr. Clerc’s guest. Last May, he placed his spouse in a long-term care centre. Having good communication with his children was one of the things that helped him through this difficult stage. He had also discussed the option with his wife in the early stages of her illness. He made no promises that he wasn’t sure he could fulfill. His own body also sent him major signs telling him it was time to take care of himself. Finally, he realized he was unable to continue offering the scale and complexity of care needed to ensure his wife’s comfort.

 

Demystifying long-term care and ending caregiver guilt

Quebec’s public healthcare system offers spaces in intermediary facilities and long-term care centres (CHSLD) for patients who require personalized care. It is important to remember that you may need to wait several months before a space becomes available. Therefore, it is preferable to plan ahead before exhaustion hits.

Private seniors’ residences also offer care units for patients with greatly reduced autonomy.

Placing your loved one in a care facility doesn’t mean your role of caregiver is over.  In fact, 94% of caregivers continue to visit their loved one at least once a week. About 50% visit daily and even provide care in tandem with staff.

In this new role, the caregiver becomes their loved one’s voice, memory and history.

 

At the end of the conference, Dr. Clerc made a reference to Charles Trenet’s song Que reste-t-il de nos amours ? (“What Remains of Our Loves?”).

The caregiver concluded with these words: “My wife isn’t the same person anymore, and being a caregiver isn’t a choice and it’s not pleasant. But my wife has enriched my entire life and I still love her.”

 

A few strategies for caregivers

  • Understand your loved one’s illness and its progression.
  • Use stress management techniques.
  • Be aware of the resources available to you.
  • Have a strong support system and don’t be afraid to ask for help.

 

www.lappui.org/en

Caregiver support: 1-855-852-7784

 

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