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Topic Mom shutting down- or just shutting me out? Go to previous topic Go to next topic Go to higher level

By LaMissGirl On 2009.07.02 09:53
Yesterday morning, my Mom had a very difficult time swallowing her medicine for her caregiver... kept rolling it around in her mouth & of course, it was dissolving & making a big goo and finally spit some or most of it out. She gets meds 3x day- and the rest of the day went fine. This has happened with me a couple of times a week or so ago and I was under the impression that Mom just wasn't awake enough & thinking clearly.

This morning, I woke her up from a dead sleep for her meds... sat her up in bed, gave her some sips, etc, explaining we need to take meds, etc. I gave her one at a time & thought she had swallowed it, then another to realize she hadn't swallowed the 1st. Anyway, to make a long story shorter, I tried crushing & putting in applesauce & she just held it in her mouth- either unable or refused to swallow. Won't say a word to me. Sometimes will look me in the eye, but usually just looks away & refuses to answer anything I ask. I think she's hearing me & understanding.. I think she's either angry or just trying to shut down & will herself to die. Or who knows?

She's been very depressed lately. Getting very paranoid, bouts of irrational behavior. Thinking I've left her alone all night, crazy stuff like that.

Back to the pills- she finally looked over to her tissue box & got herself a tissue to spit out the glob of meds & applesauce in her mouth. I helped her & then explained what can/will happen if she just completely stops taking her meds. She takes several things that will probably most definitely make her very sick- or worse. She also takes pain meds (she has had intractable stroke pain for 4 yrs) and I even tried explaining that since most of her meds are for pain, she's just going to get sick & hurt like hell. I get NO reaction. At times, her eyes seem to be watering up.. but that just may be usual. She's just ignoring me completely- and she's never done this before. I've tried pleading with her.. asked her if she wants to go to the hospital- which I figured would illicit a definite NO- but still nothing.

I truly think she's "there" and just making a concious effort to not respond to anything. Maybe the suggestion of crushing pills w/ applesauce made her angry. I don't know. I asked her if she needs to go to the bathroom- we use a lift to get her to the toilet- as she's still continent (usually). That's the only thing she answered with a shake of the head. I then asked her if she'll please let me know when she needs to go- she nodded slightly.

Any suggestions? She wants to die.. that's a fact. She's suffered & been almost completely bedridden for 4 1/2 years since her stroke & now dealing with Parkinson's which seems to be rapidly progressing. She's said numerous times she does not want to go to the hospital.

I've begged Mom to please not shut me out.. that if she's angry or just sick of me- that's ok- I just need to know and I can deal with whatever if I know what's going on. I tried pleading with her that I can't tell if she's not understanding me or if she's just not wanting to talk.. still nothing.

I don't know what to do. Or do I just do nothing? Her speech therapist comes this afternoon- and she really likes her- so maybe she'll talk to her.

By LaMissGirl On 2009.07.02 10:25
Sorry- this is so long. I ended up putting Mom on the toilet. Then I went to check on her & asked her if she wanted to get back in bed or if she felt like she was about to go. She looked me straight in the eyes & said, "I didn't ask to be put here" - meaning the toilet. I said, "No Mom, you didn't- but you wouldn't answer me either way & I figured you might need to go- so I made that decision since you wouldn't." So she says she doesn't feel like she needs to go so I put her back in her bed. Then I asked her if she wanted her hearing aid in. She said, "You control everything, don't you... or something along those lines."

I then told her that it's not my fault nor hers that she's in the situation she's in. She was definitely about to cry then. I then had a little talk with her about the fact that I don't try to control anything.. I consider myself only trying to help her do the things that she can't do for herself. But when she won't respond to me then I have no choice but to make the decision myself. I know now that she's hearing & understanding me... but what has gotten her so angry this time is anybody's guess. Last night when I told her good night & that I would be off work the next 4 days she said she was so glad.. everything seemed ok then. What's happened since then is anybody's guess. Maybe the episode of me trying to get her to swallow her pills set her off. Maybe I need to quit trying to make sense of stuff so much.

By Mary On 2009.07.02 10:38
You can't make sense of it, that's for sure.

For my Dad, he said that the pills sometimes get lost in his mouth and he has trouble getting them to take the path down his throat and they dissolve, which tastes terrible. We use pudding and ice cream to help the pills go down but it doesn't always work.

Also, I noticed that when I tell Dad something he doesn't like, he doesn't respond. I have also told Dad that I only want him safe and that is why I do what I do. I'm sure he doesn't always like me around but I don't always like being around. It is just how it is now. The poor man doesn't have any personal space!

Hugs and blessings to you, Mary

By susger8 On 2009.07.02 10:43
It's a roller coaster with this disease, that's for sure. She may understand you sometimes and not other times -- you can't really tell. She may feel cooperative sometimes and be like a mule other times.

It might be that she feels really helpless and this is a way of exerting the only kind of control she can.

Or it might not be something she's doing deliberately.

Sometimes I can't persuade my dad to do something he needs to do. It will be more work for me if he doesn't, and it will be unpleasant for him, but sometimes I just let it go. We can't control the person with PD, and they often can't control themselves either.

By WitsEnd On 2009.07.02 11:37

A new swallowing issue is later in the disease generally a potential "red flag" for the end stages of PD. Increased hallucinations and other behavior is also another red flag. It becomes a downward spiral in that symptoms get worse when the patient doesn't get meds, but because the symptoms are worse they won't or can't take the meds.

I would recommend discussing this with the doctor. If you haven't had one recently, a new swallowing evaluation by the speech therapist may be appropriate. Also, the Parkinsons' meds may need an adjustment to be more effective.

Also, if she's not swallowing enough liquids there may be dehydration and increased sodium levels and that makes the mental status worse as well. How is her general intake of other stuff? Has it changed? Have you had general bloodwork recently to check sodium and other key levels?

Sometimes a urinary tract infection will cause the symptoms to get worse. Have you had a urine sample checked to rule out infections?

Is she already on anti-depressants? Is she getting enough sleep? Insomina can make symptoms worse too.

If any of these things are going on you can choose to have them treated. They can give IV fluids to rehydrate and to administer/adjust meds.

While the end result are the same for you, a lot of times these patients aren't really doing anything intentional. They aren't deciding--I'm going to be stubborn today and so I am not going to swallow. It's not some intentional suicide wish. This may just be the stage of the disease and the new "usual"--or it could just be a bad day. Only a few days will tell.

Good luck and hang in there.

By WitsEnd On 2009.07.02 13:18
P.S. A bed ridden stroke patient with painful constricture with PD who has lived for 4 1/2 years can only mean one thing--that you have been taking excellent care of her. Fighting bedsores, infections--you had to have done a phenomenal job. I hope as you face these difficult times that you can take some comfort in that.

By sooboo On 2009.07.02 16:13
My mom exhibited increased difficulty in swallowing a few months before she passed. I wish I had known that we were close to the end, I would have done things differently. My mom also seemed like she was giving up, no matter how much I tried to make things easier. I don't know if it just seems too overwhelming or there is a detaching that happens. One of the last things my mom said to me was, "I know you think I'm crazy, but I just don't care". At the time I felt wounded, but remembering it now, it makes me smile. She did have a wicked sense of humor in her better days and sometimes it still peeked through.

I would say cherish every day and don't try to force treatments she may not want. Although the suggestions for UTI check are good, I think. When she won't respond, you will have to guess for her. That's just the way it goes. Hang in there. You are doing an amazing job.

By LOHENGR1N On 2009.07.02 16:37
We can guess until the cows come home what's going on. There can be many reasons why trouble with the taking med's. Ready? Ok, here I go, (don't know all the backgrounds and extenuating circumstances) For My fellow Parkinson's Disease Patients unable to speak or explain. Morning...pill time, We can have trouble swallowing them. Remember this medicine needs to be taken for Us to function at least somewhat "normal" it's hell sometimes trying to get it in Us. If We can't seem to swallow it, it pools in our mouth now We're stuck! Can't get it down and if we spit it out there's going to be trouble. questions and the you know you have to take it what's wrong? Um, my mouth is full I can't swallow and if I try to answer I may cough and spew it all over You..(that's not a good way to start the day for either of Us.) if I do. Yes, We can't swallow and do feel helpless when this happens. Veteran Posters may remember a thread about freezing awhile ago. When Parkinson's patients freeze sometimes it is because our minds have trouble multitasking. You know stepping up and going forward at the same time. Well think pill swallowing as the same, getting it into position and down our throat, then add it's our first dose of the day trying to get onboard. Plus now We're expected to answer questions too? Talk about multitasking. I'm not trying to make excuses for those Who are stubborn or being noncompliant. I'm saying with all You caregivers/partners have to think about it is sometimes possible to over read or think a situation and even for Us patients it's hard to understand the workings of Parkinson's on our bodies and minds.

I will here remind Parkinson's Disease progresses at different rates and ways in each of Us. So a new swallowing issue is not necessarily a potential red flag for end stages. I have had swallowing issues for some 10 or more years. Was this new swallowing issue 10 years ago a signal I was in last stage Parkinson's? No! What is for one doesn't translate to another with Parkinson's Disease. Hallucinations? Check the med's out. They do have side effects like hallucinations sometimes reading ahead to be prepared can cloud over what's really going on. Ok I'll get down off My soapbox for now...hope this helps to look from an inside view from time to time. Take care, best of luck and hang in there!

By WitsEnd On 2009.07.02 17:47
You are absolutely right that the disease progresses differently for everybody.
I agree that NEW swallowing problems EARLY in the disease isn't necessarily a red flag.

However, when a new swallowing problem crops up LATER in the disease and you can't (1) get someone to swallow the pills even after they are crushed up in apple sauce and (2) this starts happening repeatedly over multiple days--then at least for my dad, that was the beginning of the end counted in months and days--not years.

By colettem On 2009.07.02 19:00
Another possibility is that along with the new swallowing problem, she is also having the "masking" problem, when the facial muscles freeze, making any verbal or facial communication impossible. This happens with my mom when her meds wear off. She'll just look at me and not respond. After 3 years of this symptom, I've learned that it's best to not expect much from her during those times. And I'll tell her we can talk when she's more able to. But she's usually very aware of what's going on during these times, if she's not sleeping. The tragedy of this stage is that in order to swallow or communicate, she needs her meds, but she can't swallow her meds without already having her meds.

By LaMissGirl On 2009.07.03 11:06
Thanks everyone for your input. It helps immensely just to have somewhere to turn & have a sounding board. I'll catch you up & try to keep this brief, though I usually fail at that, too. LOL!

Mom finally started talking to me yesterday... sort of. She said she is NOT taking any more medicine. I gave her all the warnings about going through withdrawal, she's going to feel worse.. these meds aren't keeping her alive, just keeping her symptoms at bay, etc. Not sure she grasped all that I said, except I did keep bringing home the point that she is going to get sick from not taking her meds. She apparently "got" that point because she later said, "I know, you told me I would be sick."

Her speech therapist did come yesterday & got Mom to talk some about how she's feeling & then it was like a light switch was flipped & she started rambling incoherently about various things that made no sense. The ST suggested getting a urinalysis.. so we called her home health nurse & late last night we finally got a specimen & it was picked up & taken to the hosp lab. I'm waiting now for results.

However, in the meantime, she has taken no meds & says she's not taking them anymore. I still suggest it every now & then, but I still get an emphatic NO, so I'm not harping on it. While the nurse was here last night to check her & get a urine specimen, she started vomiting. She hasn't eaten since Wed night and hardly drank. That happened several times, but it was a relatively quiet night afterwards. I slept in her room for fear of her vomiting & choking. I'm pretty sure she was awake all night long.. though she did get quiet for a few times when I dozed. Otherwise, she's steady chattering about who knows what.

she keeps referring to "when this is all over" but won't clarify what she means when I ask.. I think she's trying to die.

She's hallucinating, paranoid, thinks everyone she sees on TV are people she knows... even me, cameras in the room.. stuff like that. Extremely jittery & jerky which I imagine is partly withdrawal. She take a number of things that one should not ever stop cold turkey.

The nurse suggested I take her to the hospital if she can't keep anything down. She did finally drink some sprite last night but it came right back up shortly afterwards. I know she's probably going to get dehydrated, but I haven't decided if we're going to do the hospital thing. I know she does not want that.. I will not let them put in a feeding tube.

I'm just taking it a day at a time- heck- a moment at a time, actually.

Thanks everyone so much for being here. See- I can't keep this brief!

By annwood On 2009.07.03 20:13
How very hard for you. What does her physician say about the vomiting? Is she on meds for the hallucinations and dementia? I agree that the hospital oftens makes things worse. We will support you with your decisions.

By LaMissGirl On 2009.07.03 22:11
Urine came back perfectly normal. I was hoping it wouldn't so it would explain the changes. Now, further dilemma of what to do now. Mom finally agreed to take her meds at 4pm today. She's cognizant that she feels so bad because of withdrawal, but she's still hallucinating. Baked her favorite pound cake, thinking surely she would eat that- hasn't eaten for 2 days. She agreed to try a bite. She chewed it up & spit it out. I don't understand and she wouldn't/couldn't answer why she wouldn't eat it. She was able to swallow her pills. My gut just tells me not to take her to the hospital. I don't want her but through the misery of a bunch of tests- every time we've done that over the years, it's been horrible for Mom. No, Mom doesn't take any meds for dementia and Mom hasn't vomited any since the episode last night. I got her a bath this afternoon & she seemed calmer afterwards and I think she may have slept some this afternoon- I fell asleep, so I'm not sure- but she definitely quieted down a lot. This is such a helpless feeling.

By annwood On 2009.07.03 23:32
I would call her physician first thing on Monday morning.

I would avoid the hospital if at all possible. The 4th of July weekend and the fact that nobody wants to be in the hospital during the first 2 weeks of July. New residents and medical students are in charge, especially during a holiday, and the care is not predictable - to say the least.

By Pearly4 On 2009.07.04 05:57
I just wanted to add I'm so sorry for what you are going through. My mother refused her meds many times but my brother was usually able to persuade her to start again.

I greatly respect your decisions and strength -- it's such a struggle. It might be that the dementia drugs would help her, we saw huge improvements with my mother. There are no guarantees they won't prolong the struggle and emotional pain and turmoil you're both in. And first there's the question of how to get her to take them and dealing with any side effects that might develop. On a personal basis I'd avoid them and the hospital, I think.

I can only offer prayers for you both.

By Cindy Bystricky On 2009.07.04 10:43
LaMissGirl, how old is your mom and how long has she had PD? You may think I am horrible,you all may think so, but depending on her age and since she has the stroke situation, I think I would concentrate on comfort. If she won't take the meds you can use suppositories, etc. for pain. Just try to help her be comfortable and love her, and if she isn't taking antidepressants see what the dr. says about that. I know I am speaking without knowing all the circumstances. But the worst thing you can do is keep someone from a peaceful death by constantly trying to make them "better" instead of just loving them and letting them go. Sorry , if I have offended anyone. Maybe I am just in a low mood..........But let God help you make your decisions and what ever you do it will be right......

By annwood On 2009.07.04 11:01
Hi, Cindy
Not awful in the least. Death will come to all of us and as a nurse I have watched so many families try to prolong the enevitable. This often makes the patient miserable when we should be attempting to make things peaceful for them.

As you said, much depends on the circumstances. If it is end stage PD keep them at home, get Hospice involved and love them. We are so geared to "doing something" that it is very hard to reach acceptance and to let go.

By LaMissGirl On 2009.07.04 11:15
Bless all your hearts! Ok- here's an update & I'll try to answer a few questions. Mom decided at 4pm to take her meds. Mom takes Cymbalta (anti-depressant), Lyrica, Trileptal (she has never had seizures - but after stroke had an abnormal EEG- thus put her on Trileptal. I once suggested to the doctor that we stop it & she said we could try but it also helps with the neurological (stroke) pain- so I opted to continue), Sinemet-both immed release & CR was recently added, Lorcet plus-morning & night & Ultram at noon. So all this is supposedly for comfort. Oh- and Lunesta & xanax at night for sleep.

When she agreed to take her meds at 4pm, she had no problem swallowing. I told her if she didn't want to take them any longer, I would wean her off so she hopefully wouldn't experience the withdrawal that she's been going through. Amazingly she has not seemed to be in pain while not on her meds and I don't understand that, except that she's obviously in some sort of altered mental state. Normally, any touch or movement to her left side, which of course has to happen often, is very painful. I got no reactions yesterday to things that normally do- especially with her bath. So I'm more than willing to try reducing these meds & see what happens.. but I'll do it gradually. Also gave her meds at 10pm and she swallowed with no problem. Still out of her mind in that she thinks there are people in the house, some sort of conspiracy, sting operation, etc, etc.. just absolutely crazy, disjointed, incoherent chatter.. and keeps thinking we're in a hotel.

Mom had a great sleep last night and took her meds this morning with no problem. She went right back to sleep, so I'm not sure what her mental state is today.

Yes- comfort measures is what I'm after. I just keep having these self-doubts & guilt feelings that perhaps I should do more. But I know my mother better than anyone else in the world- we are very, very close- and I know she does not want anything more. I just keep thinking some might think I'm being neglectful. My brother is my only sibling and he's in complete agreement & supportive of my decisions.. so I suppose that's all that matters.

Oh- and Mom is 69. Talk about horrible- this you may think really is- but I pray every day that Mom will just close her eyes & let herself go. I have watched her suffer far too long, emotionally & physically. Mom was the picture of health & vitality- could run circles around me- until 4 1/2 yrs ago when she became completely & totally dependent for everything.

Another long & miserable post & I'm in tears now. Thank you all for your support. I can't tell you how much I appreciate it.

By gilly On 2009.07.04 23:53
Sometimes the tears are good for you. You have to release the stress some way. I know you just want your mom's suffering to end. If they could give you a pill that would heal her you would take it in a second. My husband still hopes for a med that will make him feel better. He understands that the pd gets worse but still sometimes hopes for something more. I guess we all do.
Prayers gilly

By WitsEnd On 2009.07.06 09:16

What you are going through now is probably one of the hardest things you will ever have to do. You are in our thoughts and prayers.

I would suggest not making a big deal of her taking her medicines. Just crush them up in apple sauce and give them to her. Take each day as it comes. Give her as many of her favorite soft foods and drinks as she wants...and of course Ensure. There's nothing wrong with an ice cream diet if that's what she will eat.

I would encourage you to contact a hospice if you haven't already. They can help you with additional medicine that she may need in the future such as tablets that will melt without swallowing for anxiety, liquid morphine drops and other comfort medicines. Even if you don't need them now, they will be there available for you if you need them in the future.

Take each day as it comes and trust yourself. You will make the right decisions.

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