Last month in this column we looked at 鈥渢he family caregiver鈥� and more specifically the spouse caring for his/her significant other. 

We mentioned the need for caregivers to get breaks 鈥撯�渞espite鈥� so they can get out to shop, meet a friend for coffee or do whatever they need to do to decompress.  In response to the article, I heard from a retired nurse, Kathy (name changed for anonymity), who wants to help with providing respite, "but not quite yet," she said, as she is in the middle of her caregiving journey.  

Kathy and her husband are in their 70s.  He is in early-stage vascular dementia but has needed care and support from her for the last year and a half.  He also has COPD, and several other diagnoses which have meant regular doctor appointments and approximately seven trips to the hospital in the last year. When she was first actively involved in this role of caregiver, Kathy also had to care for her mother, bringing truth to the adage, 鈥淲hen it rains it pours!鈥� 

Kathy鈥檚 husband Lawrence (name also changed) is a pleasant personable man 鈥� and on the surface, shows no signs of his dementia.  But what is he like around the house? 

Kathy says, 鈥淗e cannot help it, but due to his dementia, he talks to me non-stop, he is not able to see when I am busy, and he is always interrupting me.  If I want 鈥渕e鈥� time, I try to get it early in the mornings before he gets up.鈥�

I ask what he interrupts for.

鈥淥h, it could be something that he thinks needs to be done around the house, or questions about his stuff like 'Have you seen鈥�..' I want to be and try to be patient and kind, but it is exhausting. Sometimes my impatience acts as a trigger and he gets angry (which is part of the dementia).   And I regret my impatience.  I want to be there for him and yet, it is sometimes so difficult.鈥�

Kathy says that she is grieving the person he used to be.  She is always so tired.  As a retired nurse, physical care comes easily 鈥� but she is surprised at how much she needs to be his advocate in the interface with medical caregivers.  And when they are not kind, patient, or reliable, it is doubly hard for her.  

Of course, the jobs Lawrence used to do he can no longer do, and often things are put away in the wrong place which makes her tasks more difficult.  Kathy does not have the energy to entertain.

Unlike motherhood when you are just getting used to one difficult stage and then jump into more independence, with dementia, it is a downhill journey.  As a caregiver, one feels that the present emotional toll, which can feel overwhelming, is only going to get worse. 

In addition to her health issues - Kathy had a fall a few months ago which made her daily life even more difficult - there is an overwhelming sense of one needing to stay healthy to care for one鈥檚 spouse.  She wonders how older caregivers can manage.

On the positive side, Kathy says she can still leave her husband for an hour or so, and he does sleep well at night.  A friend of mine a little further along in the care journey is regularly interrupted at night and cannot leave her husband alone.  When given a week of respite recently, she says, 鈥淚 spent the first two days sleeping.鈥�

What can we do as a community to support this growing number of aging home caregivers, who need help in their difficult role?  Regular respite would be a big help.  If there were several programs in the Valley, for a two-hour drop-off, this would give home caregivers a chance to rest, recharge, shop, have coffee with a friend, or be in a caregiver group, to share and laugh and cry.  CV Elders Take Action, in partnership with Alison van Schie, caregiver consultant and retired social worker, has a PowerPoint on how to start a respite program to present to any church or not-for-profit interested in setting up this type of program.

For more information contact me at 250-334-2321.  Please leave a message 鈥� I will return your call.