Advice To Carers: Managing Relationships & Special Needs Challenges

© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions

Last week I shared my single most important piece of advice to carers:

You need to have a support team in place to help you.

If you attempt the road of care on your own, you stand to lose your own health and most certainly the existing relationships around you that keep you going.

My advice is based on 35 years' experience in helping Australians care for their loved ones and it is backed up by academic research^[1].

Carer's Relationship With Their Loved One

Commonly, a carer finds their relationship with their loved care changes, particularly where the care involves looking after someone with dementia or if a great deal of actual personal care is required.

Compared with peers in non-caregiving relationships, carers will experience fewer shared activities and less reciprocity in the relationship^[2].

This significant change in a once-cherished relationship is a tremendous source of emotional stress for carers. It is a grief reaction to being with a person who is still there physically but not emotionally.

As the extent of care increases and the carer's lifestyle changes dramatically, resentment may also come into the mix of emotions.

If you are a carer and feel distressed by the changed relationship with your loved one, seek support from a psychologist or counsellor, and other carers though carer support groups, such as the Commonwealth Government's Carer Gateway relationships online forum^[3].

Carer's Outside Relationships

Carers need to give themselves time to themselves to restore their caring reserves. This time is well spent nurturing relationships with others who give them strength.

Overcome Feelings of Guilt

In giving themselves this time, carers are often wracked with guilt. On recently recommending more in-home care for a widowed client with dementia, her sister and primary carer burst into tears with the exclamation, "What will those in-home carers think of me?"

This reaction of guilt is common. You may be surprised to hear that in preparing a Life Plan™ for a client, 100% of the time I am more concerned about the carer's health than that of the care recipient. It is also the common headline of concern in Commonwealth Government Aged Care Team Assessments.

As a carer, you need to accept that you will feel guilt, and that ultimately it is unhelpful as it drains you of precious energy. You also need to consider that your loved one may feel guilt - the guilt of being a "burden" to you and the impact on your life. For practical ways to help alleviate feelings of guilt, read through my list in my blog, Overcoming The Guilt Felt As A Carer.

Bring Together A Support Team and Support Plan

To help share the load, ask family, friends, neighbours and volunteers for support, and draw up a weekly and monthly care plan to structure your breaks.

As part of the plan, include an Emergency Care Plan (read more), to give you peace of mind should something occur while you are not present.

If you are feeling exhausted, consider a period in respite (day respite or residential respite) for your loved one to enable you to recharge.

Maintaining Family Relationships

Relationships within families can break down where care-giving tasks are not shared, or if the distribution is perceived as unequal. This is particularly evident where the relationships may already be strained.

The good news is that studies have shown that shared care giving amongst family members can bring the family together^[4].

To share the care, I recommend a family conference, in person or over Zoom, to discuss what care each family member can provide. Through the discussion, aim to come up with a monthly timetable of care, and share what is agreed by email. Then on a monthly or bi-monthly basis, check in as a family.

Supplement this informal care with the formal care of an in-home care service provider. Share with the paid carer information on the various care roles of the other family members. As the paid carer becomes a "part of the family", this sharing of information will further support the sense of family unity.

If you need guidance at any point on bringing together a care support team, sourcing in-home care, or drawing up a structured care plan, please feel free to contact me, Danielle Robertson, for a no obligation, complimentary discussion.

Resources:

^[1] Article: Caregivers Dying Before Care Recipients With Dementia
^[2] Article: Identity, Relationship Quality, and Subjective Burden In Caregivers of Persons With Dementia
^[3] Commonwealth Government's Carer Gateway Relationships Online Forum 
^[4] Article: Caregivers' Relationship Closeness with the Person with Dementia: Positive & Negative Outcomes for Cargivers' Physical Health & Psychological Wellbeing