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Réponse de JennJilks
25 janv. 2015, 22 h 48

Frank,
Good for you. You sound so positive.
One thing that might help, I volunteer with Community Home Support, a hospice program in SE Ontario. We also accompany people to their medical appointments. I have taken notes for clients. It's an option that might help you. You can find local groups through your health agency. In Ontario 211 is the number to call, which is pretty common across the country. I don't know your location, but I'm sure you can find such support.
Take care... 
 
Réponse de fjp999
27 janv. 2015, 22 h 16

Update 

Monday I contacted the Nursing Home Admin and told him *thru voice memo* that I was certain about NOT wanting the feeding tube and that I wanted to keep everything as is on the IV fluid and vitamins. 

I just got a return phone call from Brad - the N H Admin concerning the IV. He said that, as usual, they were having difficulty finding a vein for the IV. Mom always had small veins and I was made aware of this issue as the IV proceeded... now they are running out of places to use for the IV! 

Also it seems that her body is not using the fluid and something called "Third Spacing" is going on where the fluid is going into *other spaces* - from what I understood... I will have to post to the Professional area. 

She is not urinating so they have put in a "permanent?" catheter (I guess that is not the correct way to describe it but they dont have to constantly remove it... 

Brad thinks it is best to remove the IV as they have had to use her toes to find an IV spot and the fluids are not being used by her body and she is not urinating. 

We decided that *when the IV was necessary to move to another site they would hold off on putting the IV into a new site and see how mom did without the IV fluids and vitamins. 

I asked about what she was getting by mouth and Brad said very little. I asked him if they could do some physical therapy to help her with that. He said they would try. 

I also said I wished that I would have better health to be able to get up there more. I dont have any regrets but I just wish I was able to see mom & how she would respond to me. Brad said that if he or any staff member saw a dramatic decline in mom that he would personally drive and pick me up at my house. It was very generous of him and certainly went above and beyond the usual *but kind of missed what I was thinking of but that is OK. 

Yes, JennJilks, I have always been an optimistic realist. It has helped me thru many a difficult times. I dont know where it came from, well, friends from Japan tell me I was re-incarnated from a high level Buddhist  Laughing
 
Réponse de fjp999
27 janv. 2015, 22 h 47

Well, it looks like I cannot post to the "Ask a Professional" as it is only for Canadian members. I am from the USA.

I do believe that I understand all I need to know and have found some - somewhat complicated - articles on "Third Spacing" and IV Feeding... which have helped me a lot.

I dont know if these articles will make me a better doctor but maybe I can communicate with Brad a little better tomorrow.

I am going to have a little rest after all this. thanks again everybody, frank 
 
27 janv. 2015, 22 h 58

Hi Frank,

Indeed the "Ask a Professional" service is available only to Canadians as this is the jurisdiction in which our team practices. I'm sure you understand. However, I want to underline that the forums and our community are open to everyone. You are very welcome here.

I'm glad that you were able to find articles that helped answer some questions. You sure seem to be very resourceful in getting informed. I'm a firm believer in knowledge is power, and that it leads to better communication.

Please keep us posted.
Colleen
 
 
Réponse de JennJilks
28 janv. 2015, 2 h 36

Ah, Frank. My mom was taking a tablespoonful about three times a day at the end. She simply wasn't processing the energy intake. Indeed, her body couldn't use it.

This is a really tough time for you.
Have you see our PPS and ESAS, and other palliative and pain assessment tests? 


Palliative Care and Pain Assessment Tools


 

 They are numerous, and they are secret to we civilians. 
Yet, navigating the journey through disease trajectories is an important piece of helping a loved one die with dignity.



EDMONTON SYMPTOM ASSESSMENT SYSTEM (ESAS)


A valid and reliable assessment tool to screen for the intensity of nine common symptoms experienced by cancer patients: pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. 

Patients can report their ESAS scores electronically at many regional cancer centres using ISAAC. Find out more about ISAAC (Interactive Symptom Assessment and Collection) 






Palliative Performance Scale



Developed by the Victoria Hospice Society


 
 
Réponse de Nouce
28 janv. 2015, 13 h 42

Thanks so much!! These diagrams really help me to understand better where we are in our journey.

Nouce
 
 
Réponse de fjp999
29 janv. 2015, 0 h 33

Hi Everyone,
 
I understand Colleen and of course I do feel so welcome here. Thanks again.
 
Yes, it is a really tough time and I have been thinking of my dad a lot. He is a tough one and I am sure that his grieving will pass but... of course no one knows about the future with mom. From my reading even the small amount of water and ice cubes could allow her to live for some time.
 
I actually dont know about all this. The N Home Admin said at this stage there was no pain but... I will do my best, even with the fatigue I am suffering from and with an upcoming doc appt this Friday that will really screw with my system for days, anyways... I will sit with mom and try to judge moms face with those diagrams for pain. Thanks for those JJ.
 
Well, off for some more rest and then after my nap a great hot bath. One of my greatest pleasures by candle light, essential oils, music - the whole deal & if I dont pass out from the HOT HOT HOT water then I have a do an old fashion shave!
 
Have a great night all, frank 
 
 
Réponse de KathCull_admin
04 févr. 2015, 3 h 59

Hi 

fjp999 I was wondering how the weekend was for you and your mother?  Hope that hot, hot bath was all you had hoped for in comfort. Your mention of a shave reminded me of a man I met many years ago, when I was working in the UK. He liked a straight shave, but was unable to do it himself, so bravely guided me in the steps.  Funny how there are some things you never forget. 

I was thinking about your experience in supporting and caring for your parents. Oldbat started a thread, The Long Haul which you and others may be interested in looking at. 

Sleep well everyone.
Katherine
 
 
Réponse de fjp999
04 févr. 2015, 9 h 51

Hi everyone. 

Katherine the bath was so relaxing. I dont do a straight razor shave but a single edge blade and double edge blade razor. I am told that a single edge razor is suppose to be similar to a straight razor shave.
 

Friday I had my monthly doc appt and my nightly med routine would put a horse out! Suddenly I woke up at this odd time and kept waking up every 5 mins. It was such an odd feeling I checked another clock to see if I had not accidentally changed the clock time instead of the alarm time and I had not.
 

When the alarm finally went off there was a msg from the nursing home and I knew this was it. Mom had finally went gotten the rest she deserved. She passed in her sleep just around the same time I kept waking up.

I am so glad that she is resting now and that dad understands and accepts but then sometimes asks if mom is really gone! I am told that dad is eating normally - he always has a good appetite - is keeping busy as usual.
 

I really do like this admin as he is showing up at odd hours and catching staff doing "stuff" and ending it all!
 

Whenever they have a new male patient dad will have a roomie and hopefully he will be a good match as dad likes to chat and have fun.
 

This has been a very stressful time for me and I dont see the stress ending any time soon as now I will be meeting with a lawyer on Friday concerning the nurse who started all this at the nursing home plus all the things that has to be done now with the banks etc. Family calls etc...
 

I am glad to have the pilates machine in the house and I have to make sure I am eating well and keeping hydrated! At least I am lucky that I do not have to go outside much as it is snowing and freezing.
 

I will take a look at the new thread by Oldbat when I have a free minute as well as post back.
 

Take care everyone and enjoy the new day, frank 
 
 
Réponse de KathCull_admin
06 févr. 2015, 17 h 37

My sympathy Frank. It's quite amazing isn't it how in sync we can become with those we love. How you 'knew'. I remember getting a call from my sister many years ago, saying my dad had been rushed to emergency - I too knew.

In the midst of all the stress and things that need sorting out and people you need to talk to - I hope you have time to 'be'.  Are there people Frank who support you (apart from we here)? Will you have a memorial service for your mother?

Write as you can.
Katherine

 


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