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Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
Up until 2 weeks ago Tammy was still able to walk short distances using her walker, use the toilet (had a raised seat), sit in the shower, sleep in our bed. She got really sick stopped eating stopped having bowel movements and looked really terrible. I had to call 911 and get an ambulance to take her to emergency. Tammy was an ICU nurse at the hospital where she was taken and they all knew of her situation. Anyway she had a bowel obstruction and a viral infection. When I brought her into emerg the Dr. informed me to contact the family as this could go either way! Well, IV antibiotics along with stomach and bowel drainage, through her PEG worked. She was in ICU for 6 days. However, she lost a lot of ground due to this. She now requires 24 hr care, spends all her time in her electric wheelchair or hospital bed. I had to order a lift for transfers, which still has not arrived. The PEG is not as effective and we are waiting to have a J-peg inserted. She is on morphine every 4 hours for pain. Her neck and back are extremely sore due to her head drooping. Neck braces are not comfortable and she cannot tolerate them for long periods. She has a head support on her wheelchair but that, as well, is not comfortable. Her breathing has gotten worse and we have an appointment for a consultation for a vent, tomorrow. Tammy wishes to go on a vent and with her insurance plan she is entitled to home care 24 hrs/day unlimited.
I had an emotional breakdown when she came home as the support was not in place for her and I was caring for her 24 hours a day. I had to get up every hour to turn her or add blankets, remove blankets, suction etc..... plus care for her during the day. Physically and emotionally I had hit a wall! I went to see our Dr. and she was so upset that they released Tammy without the support having been put in place so she took the issue in hand and met with Tammy's case Manager, primiary home care nurse, support workers etc. at our home (Yes she did a home visit!) and deligated some tasks. I now have night respite coming in 5 days a week along with daytime help 4 days a week. This is the max. that the CCAC can provide so we are just waiting for final approval from the health insurance for help the rest of the time.
When I hit the wall, I said things that I should NEVER have said to my wife...it got so bad that I took a mouthfull of pills and it was swallow or spit. God gave me strenght to spit and I then immediately called our DR. She saw me right away and put the help plan in place. As hard as it is for me to say these things it's important for caregivers to know how difficult things can get....please do not wait to ask for help...like I did. I just thank GOD that Tammy knows that the things I said were due to my emotional state. I love her more than life and only want the best for her.
Mark
 

sdsyd

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Messages
329
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US
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sd
Oh My goodness, Mark. You two have been through a lot. I am soooo soooo soooo glad you got emotional and physical help. Try to take it a day at a time- or even a minute at a time if u have to. I am sure lots of others will comment with advice and better words of comfort.

Love,
Cindy
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
Mark-
Your story is very heartbreaking, and eye-opening, all at the same time. I'm sure it's hard for Tammy, as a nurse, to go thru all of this. I too am a nurse, and it sure is different letting someone else take care of us!

I'm so glad you're getting help with her. Being a caregiver is such an enormous task, and it sounds like Tammy is so lucky to have you. I was my mother's caregiver for 26yrs with MS ( not full time every day ) and it can pretty much suck the life out of you. Then I was caregiver for my father-in-law for 7 yrs in my home. Thinking back on that-it sucked the life out of me too.

However, I wouldn't change any of what I did for them. And I'm sure, maybe after you can rest a bit, and clear up some of the paperwork/nurse/home visit stuff, you'll feel much better. It's good that you got to your dr when you did. God is good!

I am in the process of trying to teach my husband what may be ahead for us, and he doesn't really want to accept it all yet. But I'm sure he will, and yes, he has said things that he would normally NEVER have said before my diagnosed, but I know ALS brings out the monster in us all once in a while.

You and Tammy are in my prayers,
Wishing you only the best,
take good care
-b
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
Wow Mark, what a story, and also Brenda, cant believe this is your third time to be a care giver, I really dont how you are doing it. I am caregiver for my mom and she has been suffering from this awful disease 15months, the last 8being much harder than i anticipated. I have hit some walls myself but none quite as large as yours Mark, and your story is an inspiration, you are extremely strong. I sometimes wonder how people cope that have children with disabilities etc as its care giver for life, I dont know if I could be this strong if I thought it was forever? Sounds selfish I know, but i know her suffering is not forever and when i have to give up personal moves and holidays, friends gatherings etc I think well I might only have a short time left with her so id rather be here.

Thank you for your posts, it just feels a bit more normal and acceptable when you see how well others cope in same or worse situations

Take care all
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
mndireland-
Actually, my caregiver days are over-except when I'm at work as a nurse.

The path for me is now the patient! No big deal-it's been 8 months now-and I have a new normal! I'm the one with ALS.

take good care dear,
-b
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Mark,

Please hang in there and know that there others that understand your situation.

I'm so glad you were able to get the help you desperately needed.

I hop you and Tammy will continue along a smoother road and are able to cherish your moments together.
 

strikeout

Distinguished member
Joined
Dec 4, 2007
Messages
178
Country
US
State
NJ
Mark,
I'm so sorry to hear about Tammy's progression. It is perfectly understandable that you reached a breaking point. It is extremely difficult and a lot to deal with. I'm happy you were able to reach your doctor and that she is so compassionate and helpful. You and Tammy are in my thoughts. Take care of yourself!
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
Mark,

You and Tammy are in my prayers. I am so sorry that you came too your breaking point, but it made you realize that you needed help.
Hopefully this will make it easier for you and you will be able to spend more quality time together.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
Mark, you love for Tammy is evident in every single one of your posts. Never doubt that.

I hope she is able to regain some of the ground she lost, and that you continue to be able to deal with this amazingly difficult situation.
 
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