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By LOHENGR1N On 2009.11.21 10:51
I just read a post that got Me thinking. The poster wrote they didn't post much as the problems faced at this time seem small compared to what most are facing. Please don't anyone feel that way. We're all here to help each other. Problems are problems. I'd be willing to bet the majority here and by a very large margin feel this way too. Yes there is a lot of awful stuff going on in many of our lives here. However, when online whenever getting the chance, to vent, to question or just to update. We read others posts, if anyone has a problem, please post. By doing so you just might help others. A small problem? Let's run a quick scenario, One posts to vent after a grueling day or upsetting incident. Down in the dumps, tired, worn to a frazzle. They read a post, it is something they remember from the past. They're not going to voice anything but help. We're just not made that way here. They think and answer with a trick or way they used confronting the problem. We help others in need. Yes They may be tired, worn out and questioning the why, how come and unfairness. But that post they were able to help with........while seemingly small is a gigantic balm to the soul. Did it change the events of the day for them? Did it make them less tired? No but it did allow them to be of help. Perhaps when their head hits the pillow sleep will come a little quicker, a little less tossing and turning? Why because even at the end of a rotten day they were able to help someone else. I don't know, just sitting and thinking here. We're all in this together. Take care, best of luck and hang in there.

By lbellomy On 2009.11.21 11:26
Thanks Al, eloquent as always.

By annwood On 2009.11.21 11:37
Thanks, Al
I felt the same way when I read the post but just didn't get around to responding. We are all in this together and it would be nice to hear from those with "minor" problems? Don't know if there is such a thing. Some of the issues we might be able to help with.

By in-faith On 2009.11.21 15:34
Sometimes it's the many small problems that can overwhelm the straw that broke the camel's back. :)

By bandido1 On 2009.11.21 15:58
to my pal Al:

"I just read a post that got Me thinking."

Well, it's about time you started thinking! I must admit I thought your opening line was hilarious--especially the capitalization of me. You're the last person in this world I would think of as a non thinker.

For your information I have had a couple of bad days and have limited my posting. Turning 78 has been a bit of a chore for me but I'm hanging in there.

Seriously though, your message will, I hope, be read and heard by many of the forum members we don't hear from too often. Bob C

By Sunbear On 2009.11.21 20:33
I am one of the caregiver members that has been silent for a while. Thanks for prompting me to participate more. My hubby was diagnosed with Parkinson's over 25 years ago. Several months ago we had some issues with daycare and communicated with you all. At this point in our journey we have just about seen it all. I will try to be better about sharing my experiences when they relate to questions that arise. I wonder how more more are silent but could be helpful by sharing.

By LOHENGR1N On 2009.11.21 23:28
Hiya Sunbear.....Glad to hear from you. We look forward to gleaning as much wisdom as you care to share with us. Welcome back, we're lucky to have you with us.

I was rummaging around back in the closet looking for the old canoe paddle.....found it. So now I'm sneaking off to Texas (ssshhh don't anyone tell....) I'm going to give the birthday boy 78 whacks on his keyster with it and got a pair of vise grips for delivering a good pinch too! Humming a happy tune I post this and start westward..................

By anidaholady On 2009.11.22 12:14
Boy Al, you sure don't plan to take it easy on Bob do you? A canoe paddle and vise grips, holy cow! :) Thanks for the grins, and for the original message of encouraging people to post.

I'm here almost every day, reading, but don't have much to say husband is early in this disease (3 years or so) and I found this forum about that time. I have gotten advice and and encouragement here and plan to stick around. This is the most amazing place, and I feel blessed to have found you all!!

By LOHENGR1N On 2009.11.22 13:52
Barb, We're blessed to have people like yourself here on the forum also. And glad you came and settled in joining us.

Now as to taking it easy on Bob? hehehe it's just tough love Barb, just tough love. <WEG>

By Newcaregiver On 2009.11.23 08:50
To all: I am also an infrequent contributor, but read almost every day. It is very helpful to hear what all of you say. My hubbie has been diagnosed for 4 years now and I also am humbled by all that you deal with daily. It is helpful to see how well you all cope with the insurmountable problems associated with PD. I, too, am afraid to bring up what may seem to be mundane problems! I will be more mindful about talking. You have all helped me so much and I almost daily receive great ideas!

By annwood On 2009.11.23 09:24
There are no mundane problems with PD. We al learn from each other and we benefit so much from all of the contributors. As I said earlier it is sometimes nice to have a "small" problem that we can help you solve.

By WitsEnd On 2009.11.23 11:58
I liked in-faith's comment. The little things do add up.

And today, the week of Thanksgiving, there's probably at least one little thing on every person's mind who reads this forum. Each is either thinking about a Thanksgiving past and someone they loved who isn't here either in body or spirit; or dealing with some kind of PD issue currently; or are hoping they won't have to deal with worsening PD issues in the future.

To all of you (and I'll bet everyone falls into one of these categories)--I wish you well and God's blessings during all of these holidays. May your spirit find peace and calm; may you find at least one thing that makes you smile and may there be a cure for PD soon.

By annwood On 2009.11.23 16:24
Thank you. Yes, the Holidays are rough. I try to think of the good times. Today would have been our 25th wedding anniversary.

By Newcaregiver On 2009.11.23 16:35
Annwood: that is so hard! I am thinking about you today.

By WitsEnd On 2009.11.23 16:55

I know it is of limited comfort, but you have touched many lives by sharing the wisdom you have learned from "the PD experience". If you had been asked if you wanted your life to include this part of its journey--the part with PD--I am sure you would have said "no"--but thank you for bearing this burden and making my load--and that of others--a little lighter.

By Reflection On 2009.11.23 23:39
annwood, my heart is with you today.

By anidaholady On 2009.11.24 11:13
Annwood - I would agree with WitsEnd and add my thanks!

By Mary On 2009.12.01 12:37
I agree that no question, concern, problem, etc., is too small for this forum. If it is of concern to you, it will be of concern to us. I have found that every response to a post of mine is truly appreciated whether they have an answer for me or are just letting me know that I am being heard. Please do not hesitate to post any concerns you have.

Annwood, the holidays and special events like anniversaries are hard, but then again any time we remember our loved ones is a good thing in that we are continuing to keep them alive in our hearts. They would like that!

Hugs and blessings to all, Mary

By tfmayka On 2009.12.01 23:59
Hello to all - I am new to this forum, I knew it had to be here somewhere on the internet, and eventually I put the right info together and lo, and behold - comrads, kindred spirits, CAREGIVERS! Yay! I have been reading through several of the threads and find help in just about all of them.

This is a tough week for me, caring for Mom. I have bronchitis, and she has taken a turn - maybe has had a ministroke, but maybe just a TIA - her speech has become jumbled and she is varyingly frustrated, laughs, comes out with a full sentence, or sits and shakes her head over the nonsense that comes out. And she has vertigo, too.

Her walking has been rapidly deteriorating for months even with therapy, and now she can barely shuffle, often freezing. It takes her forever to get from place to place.

We deal with urinary incontinence, dropping food on the carpet, spills, sudden leaning that sends things flying off the table, a voice so quiet that I have to stop and go near her to hear, explaining that what she is seeing out the window is not a dead kitten, or a dead bearcub, or dead puppy, or dead bird -or whatever dead thing her imagination comes up with next.

Also, labile blood pressure - it was dropping so low she couldn't stand then be so high she risked a stroke. We have stopped Avalide and cut way back on Metoprolol, added Florinef, but needed Lasix for the edema which ended up with a weekend in the hospital where they did not give Azilect because it is not formulary, but added Midodrine, with it's added complications. Now she is on Mestinon to keep the BP from dropping too far with Metoprolol in two different doses to keep BP down. Azilect is stopped again because she needs Meclizine for the vertigo and leaning posture.

This is a whirlwind nightmare!! Do I call the Neurologist or the PCP today, or both - sometimes I have to laugh and other times I need to cry - but not in front of her, and not now because I have to go to work. And before that I will scrub up the food spots on the carpet..........

Do you folks recognize this "syndrome" or is it just me, working full time and caregiving full time? Sorry about TMI, I need someone to listen and commisserate and then pound me on the back and send me back into the ring to keep fighting the good fight.

Blessings to you, Terrie

By annwood On 2009.12.02 12:40
Welcome to our forum, Terri
Yes I recognize the syndrome(s). Progressive PD in your mother and exhausted caregiver for you. Sorry you are going through this but we are here to listen and help in anyway we can.

If there are new symptoms with your mother I would advise calling the neurologist first.

By Mary On 2009.12.03 17:09
Terrie, I feel your pain. I have walked in your shoes. Caregiving is exhausting on its own but mixed with working, family, housework, appointments, etc., it becomes overwhelming. It is best to take one day at a time and some things just have to wait to get done. When I cared for Dad, my house wasn't as clean as I liked but it was always the thing I let go at the end of the day. Remember, it is okay to take time for yourself, it is okay to vent, it is okay to cry, and then we get up and do it all over again the next day because we love the person who needs our care. My Dad passed away several weeks ago and what I wouldn't give to have him in my care again....there was a time when I didn't know how I would make it through one more day caring for Dad...and now I just miss him terribly and would care for him all over again. My thoughts and prayers are with you. Hugs and blessings, Mary

By tooyoung4this On 2009.12.22 16:48
Hi. This is my first time here....I have just started reading some of your posts. My husband has Parkinson's, diagnosed in 1999, when he was 42 yrs old. His father had Parkinson's, so he recognized the symptoms. He elected to have bilat DBS in 2003. At that time, he was taking Sinemet every 2 hours, with only minimal effect. He had a lot of freezing, and off times. After the DBS surgery, he did well. He didn't need any meds for the first 6 mos. Then he slowly started back on Sinemet. Since then, he has been on Sinemet, short acting and long acting forms, Comtan, Mirapex, Requip, Azilect. Just about everything. We have just recently changed neurologists. His previous neurologist was terrible. This new guy seems to be "a good fit". He seems to know what he is talking about. He has placed my husband on only Sinemet 25/100 about every 3-4 hours, and Azilect 1mg once daily. My husbands symptoms seem to be progressing lately....he has more unpredictable responses to meds. He has a lot of freezing. He has a lot of "festination" (I think) know....propelling forward. The upper body goes, but the feet don't. He has had more falls lately. Two weeks ago he fell and sprained his medial collateral ligament in his knee. Two days ago he lost his balance, fell forward and cut his forehead. Last night he fell on his hip...didn't break it, thank God, but did hurt it enough that he could barely walk this morning. He is only 52 yrs old. He is still trying to work a full time job. I also work. He had been out of work for 9 mos while attempting to adjust meds, etc. He finally got back to work, then he fell and hurt his knee. He is now out of work again. I have been trying to get him to retire...but he is resistant. He is in law enforcement. Dangerous, without Parkinson's. He is able to keep a low-profile in his current position, however the danger is always there. Additionally, he has a lot of doctor's appointments, etc. I like to go with him, because he doesn't always remember, or understand, what the doctor's are saying. However, I also have to work. It is frustrating. I also have two kids, 19 and 14. I am 43 yrs old. My husband is still able to pretty much care for himself....he is independent with ADLs. He only occasionally needs help...when he is frozen for instance. I try to help as much as I can...but at the same time I don't want to make him feel helpless. For instance, he likes to do the laundry...however, our washer/dryer are in the basement. This means he must go up and down the stairs. He does take his time, but he insists on carrying an armful of laundry up the steps with him. When I tell him not to do this....he insists he is fine. "If I can't do it, I won't"....however...I don't believe him. I don't want to come home some day and find him lying at the bottom of the steps...or worse...have my kids find him there.
How do you all deal with the frustration? How did you deal when your PWP was still relatively independent, but beginning to have more frequent falls, etc.

By annwood On 2009.12.22 22:47
Hi, I am so glad you have decided to join us here on the forum. We will help if it is only lending an ear.

The question about dealing with frustration - frustration just becomes a way of life and you adjust according to the particular circumstance. It never goes away but you can do things to lessen it.

I am a little confused. How can your husband be in law enforcement if he is falling frequently and can't remember facts from his physician appointments? Is he putting himself or others in danger? I imagine he does not want to face the fact that perhaps he shouldn't work anymore. It is such a terrible concession on his part.

It does appear as if he is progressing and the effects of the DBS are wearing off. I think that I would defer these questions to the new neurologist. Make a list of questions and discuss the work issue, the falling, the meds, the denial, etc. He may well be relying on what your husband is chosing to tell him.

Now for you! Realize that you can not keep all of these balls in the air without a great deal of stress. Start to organize you life in a manner that allows you some stress free time. Put the 19 and 14 yr olds to work. Perhaps Dad can do the laudry and ont of them can carry it upstairs. Can you move the washer/dryer upstairs? My guess is it will just be a matter of time until that fall does occur on those basement stairs. Ask him if he planned to fall the three times in the past 2 weeks and if not, how does he know he won't fall doing the laundry.

You can not be all things to all people. Are you able to have a heart to heart with your husband to tell him that you appreciate his help but that you have concerns that are upsetting you and far outweighing any benefits from his help? Communication is key.

Do you have Power of Attorney, are your finances in order, do you know where everything is and does he have a Living Will? If not get that done pronto. You may need it and when the time comes it is too late to get these thing done.

I do know how heartbreaking it is to watch this happen to your loved one. We live for that period in denial and then suddenly things start to happen and we are faced with reality. This is a terrible disease and no matter how much we want to deny it - it is a progressive disease. You have to be strong. You have to think about how you will go on with your life. I am sure this is not the life you envisioned but you will make it through all of this.

For the next few days enjoy the Holidays and your family. Sort these things out after the New Year. Peace

By tfmayka On 2009.12.23 01:57
Hello again - thank you Annwood and Mary for your kind comments and encouragement to my first post on 12/1.

I have been an RN for 37 years and worked in a wide variety of areas of nursing - a lot in nursing homes and home care and hospice. I feel like I need a huge dose of the advise and compassion I have spread around this community over the years. Full time caregiving is much tougher than I ever imagined - as a nurse I did my part and walked away. Now I am doing my part and doing my part and doing, doing, in and day out, day after day. I never dreamed that going to my job would be respite and relief!!!!! IT IS!

Things at home have gone from bad to worse. Mom caught my bronchitis, had a bad reaction to the first dose of antibiotic - couldn't walk, talk, or respond - I called the doctors and sent her by ambulance to Emergency where she was fine - except for bronchitis and a UTI - the reaction cleared up quickly. I learned that older folks in general cannot tolerate quinolones (the drugs ending with -Floxin) so that is now on her allergy list. I did not leave her at the hospital - too much risk in that, with changing environment, strangers, screwed up medications, influenza. So I took more time off from work after I was healthy again. Thank God for Intermittent Family Leave.

Mom quickly improved on Keflex and was better than she had been in several months - getting around better in the house, walking out her new ramp to the mailbox made her feel so very independent again. Then - last Wednesday while standing at the dining room table folding the small laundry pieces she suddenly fell. She fractured her left hip - cracked the femoral neck - required three screws to support it for healing and was bearing weight, well almost, on Friday. Monday she was transferred to a skilled nursing facility for rehab.

This morning she told my niece that I threw her out of the house. When I visited right after that, she was mostly clear mentally and very nice with the staff. This evening my brother visited with sister and brother in law and reported to me that Mom is looney as all get out, hallucinating and misinterpreting just about everything said or done by anyone, hasn't a clue where she is. Fortunately, she is in a very small and specially trained unit in a private room, and the primary nurse took care of her grandfather with PD for 10 years in her home so she understands.

I do not know what to expect from here, but will be monitoring her medications closely to be sure they do not mess around with them. I have read in some of these posts that the anesthesia reaction can last a long time. They gave her very low dose Dilaudid for pain and it worked, and she was put on Tylenol fairly quickly with Codeine for breakthrough pain.

Anything I should be thinking about? I would be greatful to hear from anyone!
I am thinking about: wheelchair mobilization in our home - she has had two fractured hips in less than two years and feet that don't want to move; also perhaps a catheter (suprapubic maybe?) full time because she has become increasingly incontinent in the past several months, and is having more and more difficulty managing frequent bathroom trips and pants up and down, or rather down and up again. I know we are going to have to have more help in the home - in the last two months I have hired a cleaning lady, and two experienced caregivers for 4 hours in the afternoon and 2 hours in the evening while I work - Mom has had an hour here and there of "privacy" which I believe will be a thing of the past now.

Christmas will be very, very different this year, but the nursing home has a prime rib dinner for patients and as many family members as want to come - so we are signed up!

May you all have a very merry Christmas! Terrie

By annwood On 2009.12.23 07:49
Good Morning,

Your post made me think of my experiences as a nurse. How I thought that I could solve everyone's problems with my "words of wisdom". The difference was I could go home at night and not worry about it. Strange when it is your loved one - you don't get to go home and you start to feel extremely inadequate. Not to mention exhausted. I am happy to hear that you are still working. Just getting away from the situation regenerates you.

I'm sure that you know that many of your mom's problems are secondary to the infections, anesthesia, medications and change of environment. That being said it is hard and you feel as if you have to monitor everything because you have seen what can go wrong. Sometimes we know too much.

The wheelchair is probably going to be necessary but it may be difficult to get her to comply. I would be concerned about leaving her unattended especially if the confusion persists. They do some pretty strange things. The coedine is probably contributing to her confusion - PD pts don't tolerate any narcotics. I gave one Demerol to my husband after he fell once and he was in la la land for a week.

The suprapubic catheter is between you and the physician. I personally don't like anything invasive because it is such a source of infection. If she remains confused, and she may, the catheter will be pulled out - I am sure you have seen that happen. We went with Depends.

Try not to allow her comments to get to you. She is confused and the primary caregiver is usually the one to bear the brunt of that. Just the way it is.

It may be some weeks before the confusion lessens and then again it may not. There is a fairly high incidence of dementia in PD.

You mention that you have worked with Hospice - any thought about getting them involved? I found that they were a great help tp me because I could talk to them, especially when all of my nursing skills abandoned me and I was just as frightened and distraught as anyone else. They will also provide a hospital bed, bedside commode, all PD meds, supplies and diapers. Someone will come and bathe your mom a couple of times a week and a nurse will visit weekly. If she needs labs drawn they will take care of it.

Good luck with that Xmas dinner. It will be nice not to have to cook. Just enjoy the day with your mom and the other residents.

By Mary On 2009.12.23 12:39
tfmayka, boy, you are on top of it! I applaud you! When I wanted to schedule in-home care while I was at work, Dad always talked me out of it. I wish I would have just insisted on it now looking back so good for you! During one of Dad's hospital stays, he lost it mentally and it was because they were not keeping him on the necessary schedule for his medication. The staff said it was difficult to get him to swallow his medicine at that point and, yes, it was difficult but not impossible. They just needed to work with him and allow him time to work out the swallowing but they seemed to be in such a hurry. The amount of responsibility one bears as a caregiver is overwhelming. Hugs and blessings to you, Mary

By lynn On 2009.12.23 17:37
Mary-You are so right about hospital staff being in a hurry. What do people without caregivers do?

By LOHENGR1N On 2009.12.23 18:54
lynn, We wing it and have all kinds of "little tricks". Also if you ever go into one of us w/o caregivers homes DON'T TOUCH! without checking first. I can't tell you how many well meaning friends I've chided because they tidied up my bedside table! The your pill bottles were messed up thing! They are messed up on purpose....if I have a med I take 3x's a day the bottle is turned upside down after 1st dose...on it's side after second dose, then it's empty after 3rd dose. If 4x's a day then upside down on side top facing the doorway , then on side top facing away from doorway then empty. All kinds of little idiosyncrasies to get us through the day and keep things straight. We all have our methods to our madness or is it messness? I figured I answer since you asked. Take care, best of luck, hang in there and Hey put that back on it's side!

By Pick On 2009.12.23 19:04
Hi Terrie. I'm a full-time nursing student/full-time caregiver to my dad who I believe is at about the same stage as your mother. I recognize the "syndrome" you describe like the back of my hand. For example, it's probably 2 years since I've reached the bottom of any "to-do" list I've made. Ugh.

I too am hesitant to hand out "advice"...but as a student nurse with several year's experience managing my dad's caregivers I will point out that the level of competence, diligence and work ethic you are probably accustomed to among CNA's in a clinical setting will most likely be diminished in the aids you find in the home setting.

I hate to sound so negative, and I hope I don't offend anyone, but I find I really, really have to watch my dad's CNA's "like a hawk." That means, for example, telling them 2,3,4 times about aspiration precautions and walking into his room mere hours later to find him lying in bed at 30 degrees drinking thin liquids....or explaining how serious my dad's risk for fall is only to come home and find him wandering around outside while the so-called caregiver is inside watching TV. Last summer my dad overdosed on vicodin (EMT's came, Narcan, ED, etc. scary) d/t an aid's neglect. The list goes on and on. Lately I've resorted to telling my dad's aids that this would never fly at the hospital where I do my clinical rotations (indeed, the aids where I rotate are my gurus)....they'd be fired on the spot. It doesn't help.

Perhaps others have had more positive experiences (I'd love to hear annwood's take on this), but for what it's worth we've tried scores of aids and about 6 different agencies. CNA's from Medicare approved agencies are much better than non-medicare approved, of course....but it's hard to get on the grid for them long-term. A big red flag for me is someone who makes a big deal about how much experience she/he has. They are usually bossy...even aggressive with my dad and argumentative with me. I actually prefer aids with less experience b/c they tend to be more open to being "trained" by me.

I hope this is helpful. I almost didn't go into nursing b/c I was afraid I'd never be able to work with aids. Thankfully, the aids I am accustomed too are nothing like the ones I encounter in the hospital, who are lovely.

Take care and good luck (and Merry Christmas everybody!). Pick.

EDIT: Amazing. It's 3 AM now, and I just woke up to find my dad wandering around the house by himself with all the lights off. I figured the overnight aid must have fallen asleep but when I got my dad back to his room, there she was watching TV. Her "explanation" was that my dad was in the bathroom...huh? How many times do I have to explain that her job is to stay by his side to assure he doesn't fall?

By annwood On 2009.12.24 11:36
Pick, I can appreciate the problems with home health aides. I was extremely fortunate to have a mother and daughter team - both LPNs who were fantastic. I knew them because they had taken care of a neighbor for 8 yrs and he died about the time I needed them. These ladies are so kind and attentive - I never worried about my husband when they were here. Even with constant monitoring he would fall if you turned your back for a moment - if that happened they would be devastated. I had to assure them that it was going to happen no matter what you did. He had lost all ability to reason and was like a toddler. He would actually plot and wait until someone turned they're back and up he would go. I know that I was fortunate and they only charged me $15/hr. They are now taking care of the lady next door who is dying of lung cancer. They seem to be rooted in our neighborhood.

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