# Caregiver Tips and Wisdom



## LovelyLiz (Nov 8, 2011)

I currently find myself serving as a caregiver for a parent who had a very brutal cancer surgery a couple weeks ago. It involves taking care of a new tracheostomy and helping with G-tube feedings (including crushing and administering medicines through the tube), as well as random other things throughout the day (cleaning various medical equipments we use, preparing solutions, etc.). 

Since this is so new, there needs a competent caregiver around 24/7 (for a few weeks anyway), and luckily I have another relative who is currently unemployed, lives nearby, and is able to help with this (the spouse lives there too, but isn't really competent to do a lot of the more technical or delicate types of care needed). I live about 2 hours away, so I stay at my parent's house for several days, then go home for a few days while the other relative comes over, and then I come back.

Though some healing has definitely happened since the surgery, and there have been some encouraging moments of lightness, this has been extremely hard. Emotionally, it's just hard to see someone you love go through such pain and difficulty. Also, it's almost impossible to find time for the work and things I need to do for my own life (luckily my part-time job is flexible in terms of hours so I can put those in when I am up at home, but finding time to write the first chapter of my dissertation as a full-time grad student has been almost impossible - and it's due in a month). I have a wonderful support network of friends - but they are all 2 hours away when I am staying at my parent's house. So it's lonely, and truly exhausting.

Since I'm still relatively young, most of my friends haven't had to go through this, so I don't have many people to draw from in terms of wisdom or tips or encouragement - or just general resources available. My friends are great at listening and supporting me, but they just don't have the kind of insight that is born only of experience.

So I'm just wondering if others have gone through similar experiences, particularly of medical caregiving for a close relative (or any kind of caregiving, really), and what helped you to make it through - and to cope, and to take care of yourself, and to not lose your mind.


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## CastingPearls (Nov 8, 2011)

I went through it with my mother, dying of gastric (stomach) cancer. It was agony for her, for my family and for me. 

The company I worked for was unbelievably supportive and allowed me a lot of time off and coworkers even donated their own time so I would have a paycheck when I ran out of vacation and sick leave. When I did show up for work, I often sobbed in my cubicle all day, inconsolable and everyone was so gentle and kind with me and often cried with me.

My friends and coworkers (many were both) listened. They let me cry and grieve while she was still sick. That was invaluable.

I too lived about two hours from my parents so spent a lot of time staying over and my father was going through a very bad period of kidney procedures so was unable to take care of my mom either, and there were times that I was pushing TWO wheelchairs alone and at opposite ends of a giant hospital and had no other family support because nearly everyone else in my family took an attitude of 'she's got it' even when I said and even begged that I needed help.

If not for my job, my boss, my coworkers always being there for me, always checking up on me, trying their best to distract me, I would have lost my mind. 

I will say one thing however, it can take a toll on a relationship. My husband was not supportive of me when I needed him most, and in fact, disappeared the night my mother died, not returning until the following morning. When he came back, although I knew logically that he couldn't handle it and that was his way of dealing with it, I clearly remember saying to myself, 'This is the first nail in the coffin of my marriage'.

He wasn't supportive. He wasn't even there. I did 'check out' for a long time afterward and was deeply depressed for three years and gained a lot of weight very fast which took a toll on my health, so I also strongly urge that you keep an eye on your own health, and if you feel any anxiety or symptoms of depression to see your doctor immediately. Also, join caregiver groups and the like online and if there are any local to attend in person, as well. 

If you have any specific questions, you know you can PM me or message me on FB.


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## moore2me (Nov 10, 2011)

McBeth, I am sorry to hear about your mom's surgery. I can't imagine how hard it must be to watch her suffer as you describe and having to take care of her most of the time. Do you have any brothers or sisters that could help too?

I did a little surfing and found some resources in your area. I understand you are busy, but perhaps you may find some of them useful. You might start with trying to locate some additional in-home professional nurinsg help. Also, don't hesitate to talk to the social worker or case coordinator at the hospital that released your mother. Sometimes they are a good place to start. 

As to your dissertation, it might be possible to get a hardship extension for more time to finish your thesis. You really should talk to the Dean of your College or the Board of the School. There is no reason for you to cause yourself emotional, physical, or mental damage by trying to carry a burden that is too much to bear. Persuading them to give you more time due to this unforseen, but tragic circumstance, is only humane and compassionate on their part. 

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Here's the resources I located. I hope some of it is of help to you.

Home care medical assistance in Los Angeles (See qualifications of need) on first page. http://www.ladpss.org/new_portal/dpss_medical.cfm

*2011 Resource Directory for Ventilator-Assisted Living* http://www.ventusers.org/net/VentDIR.pdf

(Pages 8 & 9 lists professionals who specialize in ventilator issues in California. Some specialize in children, others in adults or both.)

(P. 16 Home medical equipment such as trachs)

(Trach users networking p.19)

(Where to find supplies, etc. p.20-22)

(CA associations with related ties p. 28 & 29)


http://www.universalhomecare.org/tracheostomy-care/

http://www.caring.com/


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## LovelyLiz (Nov 10, 2011)

CP, thank you so much for sharing - what a rough road you had to walk. And I agree that keeping an eye on my health is probably an important piece of all this; especially during very stressful, exhausting times like this. Good word.

M2M - thanks for the info. My family doesn't live in L.A. (I do) but we were given some referrals to places nearby if we should need respite care. And to answer your initial question...nope, no siblings. And it's especially times like this when I wish I had 2 or 3 (or 10!).


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## cinnamitch (Nov 10, 2011)

Would you qualify for help from the visiting nurses association? If she has insurance she should qualify to have help come in and that would include a nurse at least once a week. Also I have no idea of your finances but you can usually hire a nurse to come in when you need a break. You don't need an RN, since LVN(LPN) can do trach and g-tube care. Times are tough all over and it's not hard to find a nurse wanting to pick up a few extra bucks here and there. Oh and g-tubes are pretty good at healing quickly and as long as you keep it flushed , you shouldn't have a lot trouble with it plugging up. Trachs are a bit more involved but as long as you are keeping it clean, it will improve pretty quickly as well. Be sure the head of the bed stays elevated while the feeding is going on and be meticulous with the trach care. Bless your heart, out of everything i had to do , I HATED trachs.. Phlegm and I do not get along well at all.. gag. If you ever have any issues with either feel free to pm me, I have had a lot of experience working with both.


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## LovelyLiz (Nov 10, 2011)

cinnamitch said:


> Would you qualify for help from the visiting nurses association? If she has insurance she should qualify to have help come in and that would include a nurse at least once a week. Also I have no idea of your finances but you can usually hire a nurse to come in when you need a break. You don't need an RN, since LVN(LPN) can do trach and g-tube care. Times are tough all over and it's not hard to find a nurse wanting to pick up a few extra bucks here and there. Oh and g-tubes are pretty good at healing quickly and as long as you keep it flushed , you shouldn't have a lot trouble with it plugging up. Trachs are a bit more involved but as long as you are keeping it clean, it will improve pretty quickly as well. Be sure the head of the bed stays elevated while the feeding is going on and be meticulous with the trach care. Bless your heart, out of everything i had to do , I HATED trachs.. Phlegm and I do not get along well at all.. gag. If you ever have any issues with either feel free to pm me, I have had a lot of experience working with both.



Thank you so much. It's so nice to have commiseration on the reality that trach care is pretty intense - and just that you know what I'm talking about. We do have a home health nurse that is supposed to come in once a week to check on things - but she doesn't provide any respite care, just comes in and makes sure things seem good, and answers a few questions, looks at drainage sites, takes the temperature, whatever. And it's only once a week for less than an hour. 

It just feels so scary because the trach is how she *breathes* you know? It feels like a lot of responsibility. And there were some secretion issues in the hospital with the trach that made her (and me) very afraid, but thankfully she's been able to manage them through coughing since we've been home and is becoming a little more adjusted to neck breathing. The thing is, she's actually very aware and alert and everything - and I've been slowly showing her how to do some of the things herself. She can do the tube feeds herself (she sits up) as long as someone else does the meds, and just yesterday I taught her how to change the inner cannula of the trach and how to clean it and everything. So that all is pretty awesome for having only been home 5 days. I don't want to give her too much at this point, because she still is healing in a lot of other areas of her body and is pretty tired, but she is really doing great. That's what I have to remember - that progress is happening, even if it seems slow.

Thanks for the offer, and I will PM you if anything comes up. It's just nice to have someone who knows what an involved process all this is...


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## moore2me (Nov 11, 2011)

McBeth,

The resource book covers contacts around the world. I just picked out some from LA to make it easy. Others should be on nearby pages.


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