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How do you handle being a caregiver?

If anyone on here has ever been a caregiver to someone going through cancer or other diseases. How do you do it? How do you handle the isolation? My mother has cancer and I’ve been caring for her for 6 months now. I feel like my life’s been flipped upside down. I live with her 5 days a week, quit my job, moved to online grad school. I feel so isolated.
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.

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.
dancingtongue · 80-89, M
Done it twice now. First of all, I have to admit I already was retired so not as disruptive as regards job or active life. Which is not to say that the 24/7 isolating drain does not still apply. The first time, with my wife, in retrospect, was a piece of cake. Her health and mobility was seriously declining over an 8 year period but we could still do some things together although I had to assist her more and more. It wasn't until she declined the third round of chemo and opted for hospice that I got hit with the full brunt of her bed ridden, doped up, etc., but that was a very short period and the home hospice staff that came out helped a lot. The second time was a decade later and I no longer felt I could take 24/7 responsibility. At first we had a part-time caregiver come in to help and she was great, gave me some respite, could relate better to her needs (being both female and a CNA) than I. When she got worst and was going to need more 24/7 care the cost of having someone come in for around-the-clock help was prohibitive, so I moved her into an assisted living facility. Most days I still went and picked her up and brought her to the house for a few hours, most of it frequently spent with her napping with her cat. But it provided flexibility -- knowing 24/7 back up was there -- yet she felt connected to home life. You need some respite to get over that isolated feeling, be it other family helping out on some sort of schedule you can look forward to, part-time in home paid help, or assisted living. Something that gives you a little respite and flexibility to look forward to. It is something to look forward to that is more important than the actual amount of time freed up, imho.
Picklebobble2 · 56-60, M
Caring is very isolating.
Both for the patient and the carer.

My advice would be to contact one of the major cancer charities.
You might find one locally if you look through local listings.
A quick online search should give you a few ideas in or near your hometown.

They'll be able to put you in touch with a support team/group who should be able to provide advice and support to you both.

If you can't find anything locally, contact your nearest social work department for adult care services and they should be able to look at your case and may even be able to provide services you hadn't considered before.
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Patriot96 · 56-60, C
You ned some time away. Can you afford an occasional caregiver
Graciemac654 · 22-25, F
@Patriot96 that’s a good idea, I’ll check into that!
Patriot96 · 56-60, C
@Graciemac654 either a visiting nurse or funding to hire someone
dubkebab · 51-55, M
@Graciemac654 If there is a senior center in your area they will have a list of available resources.
I'm going through a similar situation,and although it feels isolating,you are not alone.
Thanks for posting.I really haven't taken the time to write about this topic here.
smileylovesgaming · 31-35, F
Does she really need 24/7 care
Graciemac654 · 22-25, F
@smileylovesgaming mentally yes, physically she needs someone in the home with her at all times.
smileylovesgaming · 31-35, F
@Graciemac654 is she at least paying u.
Graciemac654 · 22-25, F
@smileylovesgaming she would except she doesn’t have any money. It’s not like she was retired and got it, she lost her job with the diagnosis.

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