I looked after Mum full time during the last 18 months of her life when she required high care.
There's no question that it's hard. Each situation is slightly different.
In my case, Mum had 11 organs gradually failing due to old age. She was incontinent, needing to go to the loo every 15 mins. Her balance was poor. She was legally blind - retained only 5% of her peripheral vision, none in the centre). She could get her pants down but could clean herself or pull them up. Due to dementia, if someone was not with her every second, she try to walk with pants down. With osteoporosis, the risk was a fall and broken bones. This meant waking every 15 minutes throughout the night to tend to her needs.
Even with my husband and I taking turns, it meant we had no undisturbed sleep. The toll on our own nervous systems meant that very soon it was impossible for us to function at our best.
Once a fortnight, the govt provided us with a respite carer for 4 hours. Given that we live in the country, it was barely enough to get to town and do the shopping - so it did not provide us with any rest.
Amazingly, we survived.
Neither of us regrets the efforts or the stress. It meant Mum had a far better diet and quality of life that she could have had in an aged care residence.
Because people's situations are so different, I think every carer and family has to make their own decisions. There's no possible one-size-fits-all answer.
That was the time when I joined EP. Despite its hideous problems, it helped me have some contact with people in the outside world - helped with the cabin fever, isolation and loneliness. It was never completely satisfactory. For instance, I never met anyone with similar values and interests. And I found it was almost impossible to go deep in an online context. One problem was the time lag between Australia and the States - most peeps waking/sleeping at opposite times, difficult to have a real time conversations.
List of ideas for helping dealing with isolation:
- get a dog or cat - one with strong personality,
- listen to the radio, music or talk shows can create a sense of company,
- try to get help so you can go out for a daily walk, don't forget other exercises like weights & yoga,
- see if you can become a PM-message-friend with one or more people here on SW,
- develop a hobby like writing, reading, a research project, embroidery, quilting, cooking, etc,
- invite a neighbour over for tea/coffee and get to know them better,
- ask a voluntary service to send a volunteer to provide companionship for 2 hours a week,
- try learning insight meditation, practice for at least an hour a day.
Grief.
If the person you're caring for is dying, we might start greiving even before they die.
Grief can manifest in many guises: sadness, depression, arguing with facts, irritability or anger, bitterness, disappointment, numbness, anxiety or fear.
The patient will likely also experience any or all of these.
Depending on the type of illness, the patients personality can change (for better or worse).
One's own emotions in reaction or response are can sometimes overwhelm.
If we're tired we fray easily; stress gets harder to handle.
The prospect of losing someone you love is incredibly hard.
If they are able, talk with them about their feelings and your own.
He/she will have a need to resolve things in his/her life.
- They need to ensure their Will is up to date. They need to name their executor, and preferably a legal and financial auditor.
- They need to write an Advanced Health Directive that expresses their wishes if they reach a stage of being unable to communicate or understand reality. Whether they wish to be allowed to die, or be kept alive by artificial means (for how long and under what conditions and, if it's legal, whether they prefer euthanasia and under what conditions. They also need to name the person they trust to make these decisions for them. Failure to sort this stuff out can result in the most horrendous of family feuds, and can result in the dependent person suffering in ways they could never have imagined.
- They need to see everyone with whom they have had ill-will and everyone they feel they may have wronged. The patient needs the chance to say sorry and make whatever amends they can.
- They need to see the people toward whom they wish to express gratitude, and perhaps give them momentos or other gifts.
- They need to receive visits from friends and loved ones to:
. share any secrets that will helps them to recover, find understanding and resolve issues;
. make requests for favours and tasks needing completion
. tell the story of their lives in a way that helps mourne the mistakes and celebrate the successes,
. resolve conflicts and issues with loved ones,
. receive appreciation, expressions of regret, and share the feelings of loss and grief
. and express love.
You can help organise these processes -
and this will help bring people to visit,
giving you opportunities for private conversations and a bit of company.
I hope some of this might help.
