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Topic i think grandma is preparing to leave us Go to previous topic Go to next topic Go to higher level

By gonnagobald On 2009.12.30 21:19
i have posted here before and received amazing advice from you all but now i need it again!
my grandma is 89 yrs old, is in end stages of PD and is currently on hospice. she does not take any PD meds and hasnt for quite some time now. she currently weighs roughly 76 lbs.
grandma was in respite care from last wednesday to this last monday to give us a break, when she came home, she was even more rigid than before and this concerns me. is this a natural effect of PD? the rigidity? she was able to walk with a walker for the most part before she went into respite care and she is now fully dependant on a wheelchair as she cannot stand on her own or with a walker. she had a healthy appetite on monday and it started to diminish yesterday. she wanted to go to bed yesterday about 4pm and when it was dinner time she barely ate a thing. later last night she was extremely uncomfortable and after trying to make her more comfortable and failing, i called the hospice nurse and asked for advice.
the hospice nurse suggeted giving grandma morphine and ativan because we didnt know if she was in any pain or if she had some anxiety. i ave grandma the meds and she slept thru the night and didnt wake until roughly 10 am this morning. she didnt wan anything to eat but did request some water. she was unable to suck thru a straw so i just put a little in her mouth a little at a time. she gurgled each time and it sounded like marbles in the back of her throat. she was really incoherent and not able to talk like normal. she started to act like she was agitated so i tried to make her comfortable again and it didnt work. i called the nurse and she said to give her more meds so i did. here it is about 6:30 pm and she has not had barely any urine output, no bowel movements and she hasnt eaten either. im not sure what to expect here. is she dying?

By annwood On 2009.12.30 22:19
I think I would ask the Hospice nurse to come by and check on her. They will be able to tell you if this is the last stage. The goal now is to make her comfortable. I will be thinking of you.

By gonnagobald On 2009.12.30 22:30
thank you annwood for responding! i called the on call rn last night and they told me to give her the meds. today i asked for our regular nurse to come by and check her vitals. her vitals were good even though grandma was really out of it. even when she opens her eyes, she is only looking upwards and not really answering any questions at all. she got to where you could barely understand what she was saying before this all started yesterday. i have been reading up online the end stages of pd and she is showing all these signs that they talk about.
has anyone here noticed their loved ones experience really rigid movements? grandma was a little stiff before but now she is super stiff to the point that she doesnt have much range of motion or anything.
also the choking, she is making gurgling noises like she is congested, is this also normal for pd?
and she has really strong smelling tea colored urine. although she has barely had any urine output since yesterday, it is a very strong smell. is it just because it is so concentrated?
i have a ton of questions but cannot think of all of them at this very moment. any advice or words of wisdom would be wonderful!

By LOHENGR1N On 2009.12.30 23:14
I'm probably one of the least qualified people here to give you any advice as to what to do for your Grandma right now as I'm a patient. Rigidity does happen. I don't know if you've ever seen Saving Milly? There is a scene in the hospital when She is being withdrawn from med's for a drug holiday where the nurse comes in and finds Her rigid unable to move. Also the film Awakenings was about patients with a form of Parkinson's syndrome. So yes rigidity can happen. The choking and gurgling noises also are probibly from Parkinson's. As this disease advances every part of our body can be effected. These regular functions are part of or autonomic nervous system (which controls involuntary activities, such as breathing swallowing, blood pressure, eyelid and eye movement etc.) As I said I'm not really qualified to give advice in this situation so I stuck to your questions I could answer for you. I don't know if they do but I'd suggest calling hospice and asking if anyone could come by to check again or at least if someone could spend a few minutes talking with you about these signs and how to ease the situation for both you and your Grandma. I'll keep you in my prayers, best of luck. Sincerely Al.

By gonnagobald On 2009.12.31 01:30
Thank you for your words because even though you think you may not have anything to offer, you really do. Advice from someone with PD is very helpful because my grandma was never open with me about her disease and how she was dealing with it. I am only able to see what is in front of me, but i cant begin to understand how she really feels.

Hospice has been wonderful but even though I know they are available to me, I don't think there is anything they can do other than to come and check on her to make sure she is still breathing. They are incredibly wonderful and they agreed that they felt she was nearing that 'transition'. The hardest part I would say is not knowing for sure when it might happen. I want to really be there and hold her hand when she takes her last breath. To think she may be in bed, in her room alone and she takes that last breath alone bothers me. There is nothing I can do though as I have three children here as well and my husband works 6-7 days a week. I have a good plan though that if she does go while I am here with my boys alone, I have friends nearby who can come get my children to keep them from seeing anything. They are incredibly sensitive young boys and I really feel that if they see anything at all that suggests that she may have died, they will have a really hard time dealing with the loss. Once again, Im at a loss.

When people pass, do they sometimes sleep like my grandma does all the way to the end? Or are most people usually awake? I know this might sound dumb but I have really never been in this kind of situation and don't really know what to expect. Any thoughts?

By Emma On 2009.12.31 06:32
My heart goes out to you. I don't have any experience (yet) with Parkinson's that is as advanced as your grandmothers but I do know that my husband has a lot of rigidity and although he can usually walk with his walker or a cane there are times that he is so rigid that I have to move his legs for him to get him in a comfortable position. When my grandma died she was seemingly asleep for about a day, right up to the end. Hold her hand now and tell her that you love her even if it seems that she can't hear or understand you. Not everything is in your control but I believe that whatever the outcome things will work out as they should. I will be thinking of and praying for you.

By kd On 2009.12.31 06:56
I've had experience with both my mom and dad passing at home. The hardest (and most stressful) part was not knowing when it was going to happen. Like you, we wanted to be with them at the time. Hospice had given us a booklet that listed the signs and symptoms of approaching death and there were several times when we thought the time was near and it wasn't. I was with my dad when he passed. He had been hanging on for several days (it seemed like he was sleeping) and I held his hand and told him it was okay to go and we'd take care of my mom. I think that was what he needed to hear because he passed away shortly after that. My mom passed in the middle of the night but my brother was with her.
I hope this doesn't sound too morbid but the sign that showed us that the time was near was when cyanosis (a bluish or purplish coloring to the arms and legs) set in....Please know that you're in my thoughts and prayers and it's a wonderful thing you're doing for your grandmother.

By WitsEnd On 2009.12.31 14:58
Annwood's advice about hospice is good. Don't be afraid to ask them the hard questions either. Not sure what meds you are giving, but they have drugs to help with agitation and pain. God bless.

By annwood On 2009.12.31 17:17
I still think you need to prepare a list of questions and sit down and ask the Hospice nurse. If they used the term "transition" shame on them. That could mean anything. The strong, dark urine is a sign of dehydration. Is she getting any fluids?

My personal experience with my husband is as follows:

Three weeks before he died he became quite passive and stayed in bed most of the time. He was not very alert but seemed to be looking off in the distance as if he saw somthing. If I stood in front of him he would lean over and try to look around me. This is a fairly well documented occurence in drying patients. He also thought I was his mother at this point. He refused to eat, his swallowing was very labored (we knew he had swallowing issues). A week before he died he wanted wine and cheese - I gave it to him but he only had a small amount. He was sleeping most of the time. Hospice started him on morephine and ativan because of his agitation. He was not on any PD meds because they had ceased to be of any benefit. His legs and feet started to turn gray which Hospice told me was a sign of eminent death. His vital signs remained normal until a day or two before he died. He continued to have urine output until the morning before he passed away. It was quite dark. Hospice had inserted a catheter two weeks earlier. Three days before he died he began having Cheyne Stokes breathing - a sign that the body is shutting down. Mouth open, several quick shallow breaths, nothing and then a long breath - it is nerve racking. He died at 12:10AM on Jan 8th. I had been by his side continuiously but went into the kitchen for a drink and when I returned he was gone. I have been told that sometimes people will wait until they are alone. Who knows. There is no way to assure that you will be there at the exact moment just as there is absolutely no way to predict when it will happen.

This is very hard, I know. How wonderful that you are there caring for her. Stay with us

By gonnagobald On 2010.01.01 01:54
thank you all for the wonderful feedback!
Grandma is still super out of it. she has literally slept since tuesday evening and here it is almost 11 pm on new years eve. a hospice bath aide was here today to give grandma a bed bath and she took grandma's vitals while she was here. her blood pressure was good but everything else was indicative of someone who was in the last stages of dying. her respirations were high and she has been yo-yo'ing between having a fever and not having one.
she was unresponsive during her bed bath but did furrow her brows a few times while she was being washed. she didnt seem to like the bed bath. she uttered a few words to me that i couldnt understand. i noticed that while she is sleeping, she sleeps with her mouth fully open and this makes her mouth dry up really quick. i have been using toothettes and trying to swab her mouth to keep it a little more moist, but it just isnt enough. i can see that she is dehydrated but she cannot suck on a straw or anything. i have been doing my best to keep putting tiny amounts of water in her mouth with a straw so that she has some water but she literally gargles like crazy when i do this so im not sure if its helping her or making her worse.
she doesnt respond to me at all when i talk to her and even though everyone says she can hear me, i really dont think she can.
she has hardly any urine output at all. she was changed at noon today and still she is completly dry.
i think her body is shutting down but for some reason she is still hangin on. i have had my talk with her and told her how much i love her and how much she means to me but that it was okay for her to go on and be with grandpa now.
i think it's a matter of time now, im just sad because i simply cannot tell if she is okay or in pain. this is by far the hardest thing i have ever dealt with and hope to god that she is able to go peacefully.
its so hard to understand this process.
i did talk to my hospice nurse and they call it transitioning i guess. transitioning from this life to the next. they have offered their support and if i need to talk, but right now even though its literally a waiting game, i keep feeling like im sitting around waiting for her to pass and it feels weird to me.

By kd On 2010.01.02 18:07
Just a brief note to let you know that I'm thinking of you and your grandma. It sounds like your experience is very similar to what I went through with my parents. I agree that it's the hardest thing I've ever had to deal with. The hospice people were a great help but sometimes it felt like we were still out there all on our own. Take care.

By Mary On 2010.01.06 17:16
gonnagobald, my thoughts and prayers are with you. This is so emotionally difficult. The symptoms you describe are what my Dad went through at the end. His passing was also very similar to what annwood described. Dad was so small at the end that when he was covered up in bed you would not know he was there if his head did not stick out. Hugs and blessings to you, Mary

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