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Topic Experienced caregivers! Go to previous topic Go to next topic Go to higher level

By lynn On 2009.11.25 20:18
My hubby has been in a rapid decline for the last 6 months-many falls and dementia. he's been in assisted living only a couple of months and has gone on seroquel. He had surgery last week for a busted arm and the day he was to be transferred to rehab, the dreaded feeding tube question was thrown on me. If it had not been for all the posts I've read here I would not have been prepared(if you ever are for this issue) to say no. They hit you with the worst scenerio and turn the pressure on. I stood my ground and bypassed rehab(hubby not really able to follow commands) and went back to the assisted living with additional 24 hour care. I felt in my heart that it was more important for him to be back in familiar surroundings to recoup after surgery. He was on the toilet the next day and eating (pureed food) at the dining room table. this is good but his liquids need to be thickened and he thinks he is being poisoned. What have others done in response to this? Also , his appetite is way down. Is this the course we now face?

By Pearly4 On 2009.11.29 07:37
Wow - I'm not as experienced as some, but you seem to have hit a holiday for experienced caregivers, as well as a really rough spot in your caregiving. I can only reiterate what others have said and done with these issues -- if you haven't involved hospice, you might want to -- not because I see the end in sight but because their expertise and care will be of assistance to you and your hubby. Play with the hallucinations and delusions -- offer to be the "king's taster" and taste everything before your hubby has to eat it - except meds, of course! The appetite does seem to wane when things get bad -- I'm one who believes any calorie is a good calorie when things get tough -- try sweets, puddings, sherberts, ice cream -- liquid vitamins if you feel you have to.

Good luck - I'm certain others have included you in their prayers and thoughts as am I.

By caregivermary On 2009.11.29 11:39
I'm not the most experienced either... Remember surgery will cause problems for a PWP. The delusions may go away with time???? Swollowing issues are part of the journey and may not get better. Yogurt and Kefir might be alternatives to the thickening stuff recommended. You could use kefir to make a cold drink with fruit, etc. I think it is a good thing you stuck to the no feeding tube position. I also think you should have a hospice assessment. Take care.

By lurkingforacure On 2009.11.29 12:06
Me, not so experienced either, but i'll offer up that my hubby read something about chewing gum helping with the swallowing issues down the road and he has been chewing ever since. He thinks it will help, and I agree.

Note: most gums now have aspartame/nutrisweet, a neurotoxin per Dr. Blaylock.... neurosurgeon whose parents both had PD. He has published many books and even more articles about this if you are interested. The only gum we could find that did not have aspartame in it came from whole foods and it is a bit different from "normal" gum we have chewed for years. It's pricey, but lasts a lot longer than wrigley's or the other gums with aspartame in them.

I can see chewing gum being more of a hazard than a benefit, though, depending on the type and severity of the symptoms you are dealing with., so may want to check with the doc too.

By annwood On 2009.11.29 19:40
So sorry that you are going through this. It is rough. You will make it somehow.

I would also be concerned about the chewing gum since it creates extra saliva which is often a problem for PD pts. Stick with foods that he likes - it will most likely be sweets but that is ok. It will get in those calories.

The dementia, dellusions, etc. may be worsened by the surgery experience but will most likely remain to some extent. It is impossible to to talk them out of these scenarios so don't waste your breath. I don't know how many times I thought I had convinced my husband of something only to have him return to the topic 10 min later. As Pearly said the best tactic seem to be to play along and solve the problem in a non conventional way. Tasting the food first is a great idea. As frustrating as it is for we caregivers I often wonder just how frightening it must be for them. Sometimes you just have to agree and go on.

I also feel stringly that you need to get Hospice involved. They are wonderful and will be a great support to you as you go through this.

Stay with us -0 we are here for you.

By Mary On 2009.11.30 15:43
Lynn, in my experience, yes, this is the course you now face. I agree it is time to get hospice involved. My prayers and thoughts are with you, along with a big hug. I watched my father lose his appetite, lose a lot of weight, get his liquids thickened and food pureed. It was easier for him to swallow but he did not take in more food and liquid with the change. I wish I would have taken the advice of others on this forum and had hospice involved much sooner than I did. Hugs and blessings, Mary

By lynn On 2009.11.30 19:04
It seems to be unanimous- we need a hospice assessment. I'll call the neurologist and get a referral. thanks to you all for your support. I feel comfortable with the feeding tube decision at least this time. I'll keep you posted.

By annwood On 2009.11.30 20:05
Lynn, I am glad that you are comfortable with the feeding tube issue. It is never an easy decision to make but my personal belief is that we owe our loved one respect and the right to some dignity. I am all for feeding tubes if they can assure me that the perosn is going to be great after a brief period. Unfortunately this is rarely the case and the agony is just being prolonged. While I have had regrets since my husband died, there has never been a time when I questioned my decision to not allow a feeding tube. I think physicians do a great injustice to people in the way they often pressure on this issue. My thoughts and prayers are with you.

By Mary On 2009.12.01 11:14
I have never questioned the choice by my father on not getting a feeding tube. I did research it on the Internet and reviewed posts on this forum on it and it seems in my Dad's situation, a feeding tube was not the answer. In fact, it seemed that a feeding tube was a more cruel choice than helpful one. Unfortunately it seems that the loss of appetite and weight are symptoms of the end stages of this disease. It is a heartbreaking thing to watch our loved ones lose so much weight, just heartbreaking. At the end, when I'd cover Dad up in bed, you wouldn't even know someone was under the blankets if you did not see his head. My thoughts are with you all. This is so difficult. Hugs and blessings, Mary


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