Due to my mother’s emergency surgery yesterday and now serious condition, I probably won’t be contacting people for a while, as our hospital’s new policy requires that I stay with her as much as possible, or find others who will visit if I can’t, because those without an advocate/witness will get ignored, due to lack of staff. She is not expected to get to the same level of strength that she had before this month’s many hospital stays, (which was not much anyway) so this will mean a huge lifestyle change for us, if she survives.
You can write to me, and I appreciate any prayers or encouragement, but please be patient if it takes a while for me to reply.
Thanks, I love my online friends.
Sheila
Update: I am updating our situation on my blog so all my friends can join in, and so I only have to write it down once. With so little time and energy, that seemed most logical. Thank you and bless you all!http://bluebirdyliving.blogspot.com
Oh, sis, I hope your Mom is going to be ok. Know that I will be praying for the both of you. Thanks for letting us know, as you know we would worry. You are so thoughtful.
Sheila, I just saw this. I truly hope that your Mom is feeling better and healing well. You have been such a wonderful advocate for all of us and I know that you are doing all that you can for your Mom. Please do not worry about replying until you have the time and energy to do so. Just know that we are thinking of you and love you too.
Thinking of you and your family Shiela. This can be emotionally draining so I hope you check back with us when you need a boost from your on-line friends.
Thanks all. It's only day 5 and I'm really drained, like you said Elaine. Was toold she will be there for months, unless she dies or becomes a tube-fed invalid, in that case it wwill be years of "guarding" her at the nursing home or hiring a home nurse. I didn't even get a chance to recover from my own heart attack from 2 weeks ago, so I really wish I could just be in the bed next to her. Tonight might be the night I end up in the E.R. to get enough pain relief to be able to get home. Hurts quite a bit today but I thank God it was not hurting this bad during the past 5 days. Just other parts of my body are screaming.
(Lupus and heart failure).
So whether Mom lives or dies, it looks like a lifestyle that is way beyond my strength & ability.
I sure appreciate you SAINTS who are on this site and so compassionate. ((hugs)) to you all.
Sheila - for all those friends and neighbors who ask if they can help - take them up on it and ask them to take a shift. Even if it is just for a couple hours so can regain some insanity. Don't try to do it all yourself! Take care and hang in there. T-O-Y.
You know Elaine, I have not had a friend or offer to help in thic city for 15 years, until today. It came from a lady on this site whom I have never met, but she lives in my city. I think this disease teaches us compassion. When I moved here, I was already too sick to go to church or other places to meet friends, and there was no way I could BE a friens, wgich neans doing things for them, going places with them, so the few that I did meet in Dr. offices didn't last. 4 ladies from our church have offered to visit Mom, and they have, so I hope I can keep those contacts as friends. When they come to visit, they stay 5 or 10 minutes. I asked one who has been in our life for a longer time if she could spare 20-30 minutes so I could go rest in a secret area I found. She said "You're asking a lot, don't you think?" I guess I see the world differently because I would stay for 30 minutes if someone asked. Right now I am home because I came home suffering. I took my level of pain meds and still hurt so much I had to ride out on my scooter with a seat, scooting with my feet. I DO need to figure how many hours I can go each day. I now have quite a list of errands that Mom needs run, and I have not been able to run errands for a year now, much less run errands AND spend 6 hours with Mom. I tried for 2 days ro find an agency to hire someone to sit with hrt. Her insurance covers it, but I have not had any luck so far. Looks like I will need to hire someone to help me an hour a day as well. I just come home, puy on my oxygen, take my meds, and collapse. Can't even make myself something to eat or do laudry and garbage, etc. I put out an ad, I just don't know where to do background checks ro find out if they are trustworthy or not.
I know all things eventually work out, but going through it is a bear. I'll rely on my faith. I think as I meet more people, I will learn of more resources. If Mom lives, she will be tube fed invalid at home. They started the tube feeding today. If she dies, I will have to find a more affordable place, because my disability pension is not enough to even live on my own. Probably will need a rppmmate, yuck, because its very tough for someone else yo live with a sick person. I'll have to deal with 78 years of Mom's possessions, and find a new place, then figure out how to pack and move. But I guess I am thinking too far ahead. Today's challenges are enough.
To start with - shame, shame on the lady that did not stay for that extra few minutes. Is that really a true friend or someone that is just putting on their "Sunday Show"? - You know those ones - they are in the church but the church really isn't in them.
Lets roll up our sleeves and see what we can do
1. Its like having a baby - sleep when they sleep (or when mom isn't in full service mode) Even a cat nap is better than no nap. Take a comfy pillow and blanket with you.
2. Start looking for a pattern at the hospital. Are there times when you MUST be there, but also times when you really can slip away - moreso than you are right now? Do it, even to go to that private spot you found for 10 or 15 minutes. Get fresh air for 5 minutes if you can.
3. Take some of this errand work with you to the hospital and work on it there. You can pay bills, etc at the hospital and just drop in the mail at the hospital or on your way home.
Where do you live? - In Manitoba we have Home Care. If you have something similar in your Province you should get assessed and see if you are eligible. They offer to give us the money to hire our own support but 99% of people use their staffing. Please look into that for yourself and for mom if she makes it home.
The agency that is providing the funding for mom's care should provide a listing of recommended agencies for assistance. If not, most hospitals should have a support person (in MB they have "social workers" within the hospital system) to assist in finding you support. Check with her hospital if they have a support worker that can get you in touch with any support agencies for your mom AND yourself. Trying to find these people yourself is crazy!
Don't worry about the 75 years of life in the house or future roommate. Hey - if there is that much stuff in the house, you can have giant garage sale and keep you out of room mate hell for a while!! Just take it one day at a time and do what you can. You are right - todays challenges are very tough. I wish I could be there for you.
Oh my goodness, Elaine, that is such fantastic, practical advice. That is so fortunate that you know so much about the resources that are available in Canada. You summed up that unkind lady so well, too.
Sheila, I am so sorry that things are so hard for you right now and my heart goes out to you. You are doing all of the right things: Looking after your Mom, trying to get some outside supp0rt so that the both of you can get the care you need, and doing your best to look after yourself in the process. The Mayo Clinic has an article on caregiver stress and how to cope with it. I know that when my Mom was sick, I was too busy doing what needed to be done to follow most of their tips, but the little things I was able to do did make a difference. You've probably heard all this stuff already, but here's the link in case you want to see it: http://www.mayoclinic.com/health/caregiver-stress/MY01231
Are any of the nurses/staff at the hospital especially committed to their patients? My Mom had one great nurse, Edwin, and when he was working, we knew that we could go and deal with other things because he would care for her as he would one of his own family. I'm still so grateful to him. (I suppose this fits under what Elaine said about the patterns at the hospital, but I thought I would throw it out there anyway.)
It may be true that chronic pain makes people more compassionate, since they know what it's like to suffer, but I do think that everyone here was that way to begin with. It's clear from all the effort that is make to reach out to each other when times are tough and how so many are willing to help all they can. It's kind of amazing to see so much kindness and hope in the face of adversity.
I will keep sending you and your Mom good thoughts. Please let me know if there is anything more I can do. I will help from afar if I can.
Elaine, I've never seen that acronym, T-O-Y. I love it! Your suggestions are great, thanks!!
Chris, thanks for the link, will check it out. I am home today collapsing, but didn't get to rest because the landlord called and he is obessive compulsive about being clean. He will be coming tomorrow for something that has been delayed, and can still be delayed for a long time. I told him tomorrow is not a good time, can we postpone? And he said if I am not here, he will just come in by himself with the plumber. Well this is the type of landlord who goes through closets and drawers. He is always screaming that we own too much stuff, which we don't. Everything we own is put away in cupboards. Nothing on the floor but furniture. I wish he could see some of those HOARDING shows! He's realize we are almost perfect housekeeprs compared to them. Anyway, I will be home with him tomorrow, and he orders me around and tells me to get this and that, move this and that, because he is over 80. I told him last time I couldn't do all of that, I was wearing oxygen at the time, and he ranted on about how cheap our rent is, and that if he could get us out of here, he could rent it for $400 more, so we kind of just bite our tongue when dealing with him.
My mom perked up so much in just one day that it is a great relief. She can reach all the items she needs, and the nurses are so very good to her there, so I don't worry about her anymore. A new Dr. was put on her case, and I realized that some of the staff are not even aware of these new hospital policies that my Dr. explained to me!
I appreciate all of you dearly. You are my lifeline right now. You are the reason I don't feel so alone.
So exhausted, falling asleep as I type, better crash.
That's a great idea Chris! If you can count a great nurse - get away for a while. Glad to hear things are perking up Sheila. Even in your words, you sound a bit more up too. Glad to know you are at least going to get some sleep tonight.
Thats great news about your mom seeming better today and the nurses are looking after her good. A big load off your shoulders. Try and get some rest, I know its hard when your mind is thinking about so much. Make sure to look into help for the both of you, even for a few hours a day, it will make all the difference.
Sheila, that is just wonderful that your Mom is feeling a bit better. What great news! I am glad that they are taking good care of her and that you have some breathing room now. I will keep sending you those good thoughts . . .
Hello friends! Thanks for your compassion. I absolutely crashed this weeekend, but I think I've had a miracle. NO TN PAIN! There's no way I could be there for Mom while fighting lupus, the heart attack I had 2-1/2 weeks ago AND TN. I also got my first grand-daughter this week!! You can see her pics on the third post http://bluebirdyliving.blogspot.com We have had to do so much talking about funeral preparations and things to be done after she passes, that I'm exhausted emotionally and physically. Now that Mom is a bit stronger, I will only go see her for 2-3 hours twice a day, if I'm even able to do that much. Was staying 8-15 hours. The nurses are very good to her, so I don't have to worry about her care anymore. I just have to try to protect her from these random weekend doctors that plan to send her home in 3 days, not knowing all the plans her usual doctor has for her, and not knowing that we need to talk to to the transition team, who will send a nurse to the house for a while. They need to at least keep her until she can walk to the bathroom, abd ubtil the give her something to eat and see if her bowel can handle it ir not. If not, she'll be on Ensure for the rest of her life. There are other things her Dr. wanted to do, so I will be calling him immediately if some idiot Dr. sends her home too soon, because at this point, she and I will both die if I have to ber her nurse 24/7. Oh well, one hour at a time. I love all of you for your compassion. I tell you folks things that I don't tell anyone else. OH! I can post pictures of my first grand-daughter on my page! Will try that now. I posted 20 photos 10 days ago and all of them disappeared.
Hang in there! God bless you all who are such soldiers through this and other illnesses.
You need to take it esy, I hope you let the nurses take care of you mother some. It sounds like they are doing a good job for you. It would be nice to see your new Grand-daughter.