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Posted 6/5/2006 5:26 PM (GMT 0)
I invite you to use this space to address caregiving issues. This is a two way street we are on, and we need to better know how it feels to be in the shoes of someone w/PD. 

Some issues I am facing with my beloved are: 1) medicine changes, 2) constant fatigue,

3) sleepiness, 4) emotional changes,

5) skin problems, 6) loss of appetite, 7) diabetic needs, 8) social withdrawal

Some issues I face within myself include: 1) loss of contact with church/social community 2) not having or making the time (being too tired to make it happen) to do the things I enjoy (flowerbeds), 3) being outside, taking walks 4) getting out to grocery, etc. without worrying and watching the clock, 5) difficulty to travel to see family, or vacation trip. 

Each of the above could encompass long discussions and exchanges of ideas, and that is what I am asking from you. A way to exchange ideas and suggestions on CAREGIVING so that together we can make each day the best we can for our beloved AND ourselves. 

This is an excellent Parkinson's Forum which is run by Ed, a very gracious person who has scheduled a chat on June 7th, at 8:00 EST.

From your Forum, I have met new people and have learned more about everyday issues we face that the drs. and books do not/will not tell us. Thank you for your help.

 

Posted 6/5/2006 6:56 PM (GMT 0)
Thanks Eureka.  I think the ball will roll now.  I am so looking forward to some interaction with others who understand the stresses of caregiving someone you love so much.  I also face the same challenges that you list.  Also my spouse has difficulty using appropriate words...sometimes I feel as if I am translating a new language.  I am worn out by the end of the day!  I have an alarm system to remind of med times as he ignores his most of the time.  It is difficult to describe a full day's schedule with PD unless you have experienced it.  I am fortunate to receive individual counseling weekly...more if needed.  This has been a great release for me.  Later, I am being paged. :)

Posted 6/5/2006 8:14 PM (GMT 0)
I also have his meds on a timer, and when I take them to him, he also does not take them, because he is so lost in his current thought, or intent on what he is doing. I do not like treating him like a patient or child, but he needs them every three hours to keep his life functional. I do not feel it is rebellion, but no reality of cause & effect. Any ideas anyone??
Posted 8/14/2006 5:42 PM (GMT 0)
New to this forum and PD and need some help.

Mom, 86,was diagnosed a couple years ago with PD but I have only been caring for her the last 7 months since I moved her to my town to an assisted living home.

Mom has probably had PD for the last 15 years or so I believe, I can go back that far and notice small changes that were gradually occuring but never noticed by us as symptoms of anything but her growing old and cranky.

My biggest problem is in dealing with her emotional needs.  She only seems to want to argue and fight.  I found that reading to her helped a lot because she misses being able to read.  Once we stop tho she gets on some subject and won't get off of it.  I try hard to answer in a way that she won't fight and argue but it seems impossible for the most part.  If I don't answer because I know there is not an acceptable answer it is just as bad.  I know this is the disease and not my mom but I don't know what to do.  I usually have to leave just to stop the arguing.  She won't listen to me when I try to explain that we shouldn't argue about things that I can't figure out how to answer.  Mostly she talks in circles or thinks she has said something and hasn't.  If I say I don't understand what she wants me to know she comes unglued and it is my fault that I don't understand.  I am not trying to win any argument with her but there are just no answers she will accept.  Yesterday she told me it was my job to solve all her problems, she wouldn't listen when I tried to explain that I can't solve her problems.  I know this isn't my mom but how do others of you end an argument session successfully??  I hate leaving her because I know it is more trauma and I hate myself after leaving but I just can't sit there and argue and she won't quit.  I go to see mom 4-5 times a week or more as her needs require but that is never enough.  I have called in Hospice and they have accepted her so at least I can quit trying to figure out how to deal with her medical problems myself.  I just don't want to spend her last days fighting  :(

Posted 8/14/2006 8:20 PM (GMT 0)
Welcome Lort, I am sorry we have to meet under these circumstances.  My husband's dementia behavior is so similar to what I experienced with my mother, who had Alzh., and was in a Skilled Nursing facility for ten years.  When she went on a tirade and I was unable to divert her attention, or soothe her spirit, I excuesed myself by saying "Mother, I want you to be happy and I can see that you are not happy with our visit today. So I am leaving now. I love you, and want you to be happy. I will be back later..bye". Leaving immediately is the key to this tactic working. I stayed at the NH and checked in on her, but she forgot when I was out the door. The event was out of her mind.  I was surprised that she learned that she held an important key to our having a good/bad visit.  The result of this was that I was taking care of her needs but not subjecting myself to her verbal abuse. Hope you can expand on this idea.

As I watch my husb. I am constantly reminded of the abilities and  he has lost to PD and the frustrations he faces daily.

   

 

Posted 8/14/2006 8:56 PM (GMT 0)

eureka, i have been tryint to get all the info from anyone that i can on pd and dementia, looks like you might have some, my hubby is 47 and diagnosed with pd 2 years ago and severe depression, but man is some of his behaviors to say the least very bizarre, he can no longer bal a check book, do laundry , and has hallucinations. he has numerous episodes of crying uncontrollably for no apparant reason, you can not carry on a conversation with him as he does not comprehend what you are trying to tell him for the most part, these behaviors are just wearing me out, as i work fulltime and partime then have to care for him and 12 year old daughter!!!!! i feel like i am at my whits end most days, just dont know waht to do anymore,just started on an anti psychotic med on friday, cant remember the name, little tiny blue pill in the same family as haldol, i dont know if this will help his symptoms or not, the other night i was at my part time job and he came in just sobbing, doesnt know why , sd he was just sad. he does this alot , i dont know what else to do. i dont know if all of his confusion and comp problems are dementia or what, 4 docs have told us that meds would not be issue, some have sd possibly due to severe depression........ 

Posted 8/14/2006 9:28 PM (GMT 0)
Jules, I am so sorry you and your husband are experiencing these unsettling times.  What meds are your husb. on for PD or anything else?  Have you confided in his doctor? Is he seeing a Neurologist who specializes in PD?
Posted 8/15/2006 12:32 AM (GMT 0)
Thanks eureka.

I have been trying to put the choice on her but wasn't sure if I was being cruel or not.  She does seem to understand certain tactics but will keep telling me how unfair I am when I leave her all alone when she is upset.  I try not to take anything she says to heart but always wonder if I am doing right.  It is always a marvel to me that she never acts this way with anyone else but I guess it is because she knows I will keep coming back and she isn't sure about everyone else since they don't live close by.

This is such a sad disease because it turns people into someone they never were before.  Will keep plodding on as everyone must that is responsible for someone else's care.  I will try your words at departure they sound so much more loving than mine when I am frustrated.

God bless you and your struggle!

Lort

Posted 8/15/2006 3:00 AM (GMT 0)

Lort, I know exactly how you feel. My Mother (a sweet, stay at home Christian lady) turned into a woman who could/would bite, pinch, spit, and had a vocabulary I had never heard.  She would say "if you loved me, you wouldn't put me in a place like this", anything to cause me to feel guilty.   

Most days I cried on the 15 mile drive home. It was the most exhausting 10 years of my life.  Daddy (a medical doctor, who had cared for Mother, had a severe stroke, which left him unable to turn over, eat or speak) was in the same skilled facility and lived for 7 years.  However, his spirit remained sweet and cheerful. 

BTW: after I had tried this ploy several times, one day she looked up at me with twinkling eyes and said clearly, "am I being good enough for you to stay awhile".  I laughed and went out and got us little ice cream cups.  The mind is such a strange thing.  Alz./ dementia patients become very cunning and the trained staff understand this better than we, the family.  Does she like sweets...some treat?  Bribery works. Also, would she hold a doll, love it, dress it? 

And as you love her, you must take care of yourself. She is your big, little child now. Treat her with kind, loving discipline.  I know with job, family, it is so very hard, but also treat yourself with some kind, loving also.

My thoughts are with you

Posted 8/15/2006 4:51 AM (GMT 0)
I knew I wasn't alone eureka, but it sure feels nice to see it in print!!  I do take mom for ice cream or take her Jamba Juice.  I make her cookies too to share with the help but she hides them in the freezer, LOL.

I know there is a reason we must go through trials and tribulations etc, but it sure is hard to see those we love have to go through this kind of torment.

Thanks for being there for me and others that will read your posts, it really does help.

Lort

Posted 8/15/2006 3:59 PM (GMT 0)
Jules, how are you today?  You are certainly facing a huge mountain of difficulties and I am glad you have a doctor for yourself and hope the medication will "kick in" soon. Do you have any family nearby to help you out?  You would probably benefit from some  good, stimulating conversation that did not revolve around health issues. Are you and your husb. the same age? What medication is he on?

My Husb. also does not understand cause and effect, nor could he balance a checkbook.  I can tell him that "supper is on the table" and it just doesn't sink in.  That process which gets him from his chair to the kitchen table is gone.  It is the same as the brain not telling the foot to move, so he drags this foot along. If I say "Right Foot move", or nudge the foot, it will move. But he does not think to tell his foot to move for him.  It is a very frustrating process to watch him move about.

It is exciting that you have a 12 year old. She can bring such energy to the household.  Wow!! And a double challenge for you.

Hang on....somewhere there has to be help for you.  You are a courageous lady.  Please write again.

Posted 2/13/2015 8:39 PM (GMT 0)
My significant other was diagnosed a month ago and told his family/friends. NO ONE is calling or dropping by; and my friends have disappeared. It is the loneliest I have been in my life...also the saddest. I am watching this wonderful man I have been with for 17 years realize his family and friends probably won't be there. I make sure he knows I will
Posted 2/16/2015 7:39 AM (GMT 0)

Simonsali11,

Welcome to Healing Well. You have re-kindled an old thread, which is great.

 

When first diagnosed I told parents/in-laws - they understood. My kids were young, so we didn't tell them for awhile. I told friends and co-workers over time - I would say that most didn't understand. As you indicate, I was surprised at the response from some friends - nothing ... never really heard from them again. Although I'm sorry to have lost those friendships, I have gained many more. My 'new friends' who have Parkinson's are the best! That has been the  best thing about this disease ... the wonderful, caring people I have met!

 

Being a caregiver can be draining - in many ways. Perhaps you could look for a caregiver support group. Or better yet, start one. Being a caregiver is an incredible committment and gift of love. Thanks to you!

 

lizzy4451

 

 

Posted 2/19/2015 8:17 PM (GMT 0)
I am so glad to see this page is still active. I have just been recently diagnosed with PD and I was told on a phone call when receiving my results from a Datscan that I had taken. I was told that I have Parkinson's the test confirmed it and that the doctor will go over everything with me in 6 weeks at my next appointment. I am taken back by this because I feel that this should be handled with more concern then the common cold. If I was to receive this type of result from my tests I thought for sure I would be called into the doctors office for a one on one with him. I don't know maybe I am crazy? It just seems to big to say you have this see you in 6 weeks during a phone call. Mean while I have not been feeling good at all for the past 5 years but especially worse these last 4 months. Tremors, fatigued, pain, my foot has dropped causing a obvious change in my gate and this is leading to a deepening depression. Is it right that not much will change with treatment or am I wrong for believing I could be doing better then this? And any suggestions as to what I should do if anything? Thank you
Posted 2/20/2015 5:58 AM (GMT 0)
Bobsard63,
Welcome to Healing Well ... glad you found or rediscovered us!

I agree that delivering the news over the phone is not the most appropriate. It might have been better if it were an appointment in person with discussion on meds and other topics such as exercise, etc.

And to say it was 'confirmed' would be inappropriate. There is no definitive diagnosis for PD - it's a process of elimination. Common tests include: CATscan (however it's spelled), EEG, blood tests. Each rules out things like stroke, or brain tumor. Then if you meet at least 4 of the criteria such as lack of arm swing in one or both arms, then ..... bingo! You are diagnosed with PD.

As for meds, there are some meds more commonly prescribed early on. Everyone responds differently to meds. Listen to your body, educate yourself on meds they propose and talk with your doc. MEdictions commonly prescribed to newbies are: Mirapex, Requip and Neupro (a patch). Depending on your age, I would definitely educate yourself if your doc prescribes Sinemet or Stalevo or Levadopa/Carbidopa (sp?) - my bias.

And talking about docs ... hopefully you are seeing a neurologist - better yet, a neurologist who is a movement disorder specialist (MDS). An MDS is a neuro specializing in movement disorders such as PD or Huntington's. They can be hard to find -look in larger cities and teaching hospitals primarily.

I would encourage you to fight back! Educate yourself. Take an active role in your treatment (don't just sit back and have our doc tell you what to do- have a 2-way discussion). And ... exercise! Studies are showing that 'forced exercise' can slow your progression.

Best of luck! Keep us posted!
lizzy4451
Posted 2/21/2015 1:13 PM (GMT 0)
Thank you Liz, I was told (by my doctor and through research) that a Datscan is a test with nuclear medicine that is injected 4 hours prior to the exam, they give you iodine so that the medication can actually bypass the thyroid and go directly to the brain. They can actually measure the level of dopamine in the brain and get a much more accurate detection of the disease. The Michael J Fox foundation (many studies) has found this extremely helpful in treatment effectiveness for PD. Those diagnosed without the accuracy of this test are about 60% successful with treatments, where those found with lower dopamine levels in the PD range, from having the datscan, have had much greater results from treatments. The hospital must have a nuclear medicine department and we have less then 1000 facilities that offer the test in the United States. My neurologist believes this test is the most accurate way to determine the presence of the disease. So it is much different then a normal catscan. I have seen a lot of literature in his office on Levadopa and I have done some research and have been a little concerned about the side effects. Any input on Levadopa? I will stay in touch and let you know and thank you I will do my homework before my appointment!
Posted 2/25/2015 3:12 PM (GMT 0)
Thanks, Liz, for responding to me. Z (my significant other) sees a MDS who has prescribed Requip (4 mg at this point). We had a rough few days with it (headache, stomach ache) but he has adjusted lately. He is on
eldepryl for depression, but still lashes out in anger for no apparent reason. He still works but his employer is now trying to fire him because he is slower and has had to take days off for dr appts. This causes him great stress but he still wants to work. We are lucky in that I retired last year so I will have lots of time for caring for him. His family has not stopped by since he was diagnosed (two adult sons and a sister); at your advice I am going today to a local caregiver support group. Thanks!
Posted 2/26/2015 2:56 AM (GMT 0)
simonsal11,
Glad to read that Z is seeing an MDS.

You indicated Z is taking Requip (4 mg) and also indicate 'we had a rough few days'. Are you saying that Z started out on 4 mg on the first day? Usually folks titrate up or down (gradually increase or decrease) over a period of 2-3ish weeks. Maybe start at 1 mg and increase .5 or 1 mg every few days until reaching the appropriate dosage. I think I started out on 4 mg requip - titrating up to 4 mg over a period of maybe 3-4 weeks. During those initial weeks I lost my appetite and about 10 lbs. At the time I weighed less and was a bit concerned about the weight loss. (Today I say '... bring it on!!!!') After that initial period my appetite (and the weight) returned and all was well. Actually I think I had some nausea also - it passed.

I also still work full time. If the person with Parkinson's (pwp) informs their employer that they have PD, the employer is under some obligation to make accommodations (that's the word that is used). I don't legally know the steps that must be taken to make that happen, but if Z is concerned about getting fired, he may want to check. Perhaps you could check with your HR department - present it as a hypothetical situation (although you know they will know you are asking for yourself).

When I decided to share my diagnosis with co-workers and upper mgmt. they asked if there was anything I needed or any accommodations they could offer. Accommodations can include things like a 30-minute break mid-morning and/or mid-afternoon. It might include a flexible morning schedule arriving sometime between 8-9 AM rather than a previous punctual 8 AM, if one is having trouble sleeping. (I think you would still have to work the same total of hours, although I'm not sure.) It can include the use of a PC/laptop/tablet for note taking if one's writing is illegible (that's me). It can include things adaptations to your desk or chair for your desk or a phone headset rather than a phone you hold.. I'm not saying these are necessarily things for a pwp ... just that they are the types of things that can be accommodations.

I'm sorry to hear about the family's response to the diagnosis. Hopefully they will come around once they learn more about the disease and are more comfortable with it (I'm not suggesting that is an excuse).

Keep in touch,
lizzy4451
Posted 2/26/2015 5:50 AM (GMT 0)

Bobsard63,

You are correct that a datscan provides helpful info in determining a diagnosis. I didn't even think of it because so few people have access to one. That's great that you do.

 

You mention levadopa. Carbidopa/levadopa is also (basically) known as Sinemet - or Stalevo. Sinemet is the gold standard. It definitely works the best. However, SOME people develop some undesirable side effects - primarily dyskinesia. Dyskinesia is the involuntary muscle movements that michael j fox sometimes has. On average people start experiencing dyskinesia after 5 years.  They get worse over time. Some people never develop this side effect. Some people chose to start Sinemet early and some elect to exhaust other medications before starting Sinemet. Newbies are often prescribed one of the dopamine agonists - Requip,Mirapex or Neupro (delivered via a skin patch). The most common and potentially devastating behavior of this class of drugs is compulsive behavior - most commonly sexual obsessions or gambling. As I've mentioned, I would encourage you to educate yourself on meds and work with your doctor.

 

lizzy4451

Posted 2/27/2015 12:47 PM (GMT 0)
Lizzy, Z started on 2 mg of Requip for 8 days and two days ago he went to 4 mg. I am scheduled to call the neuro next week and will let her know the side effects he is experiencing...luckily no OCD. Will put off dopamine meds as long as possible.

Chere
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