Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Loneliness


  • Please log in to reply
40 replies to this topic

#21 michelleee

michelleee

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationCalifornia

Posted 06 February 2013 - 11:36 AM

I find NPI caregivers forum and "Ask the Doctor" to be very very helpful. I find answers to our problems that far exceed what my husband's neurologist has ever been able to offer. I hope that soon, something comes along --medicine--that has a gentle way of
treating Parkinson's without all these horrible side effects!! Mind, Mood and Memory are effected by both Parkinson's and the medicine used to treat the disease. Each day proves to be yet another challenge for us all!
Take care fellow caregivers!! :cool:

#22 lalueder

lalueder

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 19 February 2013 - 12:19 PM

Hello,

I am new to this site and I am not quite sure how to get started. But my husband has PD and is 85. I am 58 and I am finding it very hard lately to cope with the progression of his disease.

He was not diagnosed until late in life, about 6 years ago. He does not have tremors but stiffness of trunk.

I have read some of the stories here in the forum and I am very interested in just how much Medicare would do for us in order to help me keep him home and how I go about finding some time for myself and not feeling guilty about taking him with me when I do go out.

He is no longer able to be left alone and I have wonderful neighbors who come stay for awhile now and then when I really have to get something major done outside the home.

His medication is now causing dementia, just as someone noted in another story. We have good days and bad days but more bad than good lately. I really am finding it hard to take care of me..... I don't wish to be selfish but I don't sleep well as he needs some assistance during the night, I don't leave the house much anymore as I feel like I need to take him with me and I am beginning to resent just being here now in this situation. I love my husband very very much and he is my biggest supporter but GOD THIS IS HARD!

Any inexpensive suggestions would be appreciated and I guess I need to contact Medicare about what they would cover or not.
Thanks in advance for sharing and thank you for this website for which I may obtain information and help.

#23 McCall

McCall

    Advanced Member

  • Members
  • PipPipPip
  • 63 posts

Posted 19 February 2013 - 03:55 PM

Dear care4loved1
My husband was DX with Parkinson's about 10 years ago. He's 58 now. As of late, I'm noticing more and more memory issues and changing of mind sometimes in rapid succession. He also has serious issues with compulsive behavior and that problem is without a doubt the most difficult for me. Funny thing is, he only takes Sinemet for his symptoms. The neurologist has told me Sinemet alone can also cause OCD. Part of obsessive compulsive disorder manifests itself in rather selfish and childish behavior. Michelle


I wanted to say that my husband has been suffering from Compulsive obsessive delusion for about 18 months now, So it preceded finding out he had PD and obviously preceded any meds for it.
This delusion had to do with a woman he used to work with I won't go into too much detail but it has been the hardest time of my life since I found out. Anyway when he got the PD diagnosis and started on Sinemet, and later on Stevelo , it made no change in this particular situation. HOWEVER, an event a couple weeks ago, a business trip he took, led to a total change and I have my husband back and he realizes that that whole thing was in fact a delusion and that his compulsive behaviors related to it were just that. I Pray that the nightmare is in fact over, it seems to be. I don't know if now knowing that he was delusional on this and can be so will help avoid such things in the future, When I tried before to tell him it was a delusion or that his behaviors had become compulsive and out of character he would not listen, He says that he did not believe such things could happen to him so it had to be real, but that he now DOES realize it did happen to him and it was not real and will be and is more concerned with his mental state.
I am so relieved that this even it over, but I have no way to know what the future will hold in that area.
I do know though that it was the illness itself and not any Meds that was the cause of the delusional, compulsive obsession.

#24 Kristakj78

Kristakj78

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts
  • LocationAllentown, PA

Posted 21 February 2013 - 10:01 AM

I totally understand, have empathy and can relate to all your posts. I have had mood swings for years, but haven't had the most supportive family either (that's another story). I have a mother who has her own issues, and has always been more business than nuturing. I am an only child. I have a dx of PD, and my husband has a dx of bi polar, so it has been the blind leading the blind, and neither of us have spoken much or been close to our families (prob what brought us together in the 1st place). That being said, aside from medical issues (let's not forget that PD is a chemical imbalance in the brain to begin with), we've both had it environmentally for years. This made the medical side of things harder. Everyone needs a support blanket, and this fourm is a great place to find it, no matter what dynamics you have or where you may be coming from. Everyone is understanding and listens. You will find you will meet some really nice people here that you can vent to. On top of the dopamine loss, the frustration of figuring out the right meds, their side effects, and the feeling of your feet being attached to the ground are enough to make anyone frustrated. It is one thing for others to work against you, but when your body works against itself, ugh! It is like when you stub your toe and you automatically scream...but with PD, it is all too often. It is a struggle, in multiple ways, but hopefully your husband will find the right meds. I know it has taken about a year for me. I know many that have taken longer, and I am blessed the Sinemet worked so well for me. Considering that there is no cure and that the disease is progressive, we will all have future struggles, but hopefully there will be a cure soon. I feel for your struggle though....for both you and him. Good luck!

#25 johnnys

johnnys

    Advanced Member

  • Members
  • PipPipPip
  • 178 posts
  • Locationnys

Posted 17 June 2013 - 05:22 PM

I have those same feelings and responses from my spouse. Thought I was going crazy. I have noticed a significant change in personality, tremendous mood swings and cognitive issues since starting Requip. In fact the new doc may take him off it since his emotions become so intense, there is no reasoning and sometimes no remembering. I am so grateful I found this site and can communicate with others in the same situation. Most people think PD is all physical, not true as we realize how it changes relationships. My DH is 52, we have 4 kids together and managing a household single handedly is getting a bit overwhelming. Faith, prayer and these types of discussions should help. Thank you for sharing your feelings.

hi, hi everyone,
i have pd for about four years.while the dieease has affected me physicaly emotionaly i'm better than ever.i use to be a nervous patient and had to overcome nervous symptoms like what is called depression and anxiety.
What has made me well is now i have a habit of spoting my emotions and tempermental reactions.i firmly belive others who have pd can be emotionaly well throughout this disease using this method of spoting..this group is 75 years old this year.www.lowselfhelpsystems.org

#26 LoveMyHubby

LoveMyHubby

    Advanced Member

  • Members
  • PipPipPip
  • 57 posts
  • LocationGulf Coast

Posted 17 July 2013 - 04:11 PM

It can be lonely at times dealing with a spouse with PD. My DH doesn't see the changes and we have gotten into arguments b/c he forgets things and sadly will accuse me but I know that it's his PD and it's effects. And he's slowly realizing that accusing me doesn't solve the problem. I know there are many who are further along than him but in my experience so far it's best to just let it go, don't argue if you can help it. I try my best at all times to be loving and understanding but at other times I put my foot down when needed, haha. He knows I love him and knows I do and will do my best to make sure I keep him in line and expects nothing less. I know each PWP is different and that their caregivers have to do and react the way that's best for them.

As for the stress you're feeling, try your best to take time for yourself. Even if it's a short trip to the grocery store by yourself. My DH and I have three little ones so a quick trip to the store is like a mini vacation, hahaha..... Also try to look at the positive. I know not everyone copes by having humor but you can still be positive, love whatever small victories he has. I hope I've helped. :)
And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#27 tracyrose

tracyrose

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationLA

Posted 28 December 2013 - 12:03 AM

My problem is that I feel so blessed, and that the situation could be so much worse so I don't want to voice my complaints.. yet I am overwhelmed, sad, neglecting myself and go through moments of paralyzing anxiety whereas I don't uphold my responsibilities.. I can't clean, food shop - all I do is wait for him to wake and then its kinda like rinse and repeat. I am alone with this disease so I am considering moving us closer to my family so that I have a break.. today I took my first anxiety medication to help..



#28 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 283 posts

Posted 28 December 2013 - 09:23 AM

Tracyrose,
Yes, it can be lonely, often there is a lack of empathy from the one you are caring for. I saw that it seems to be consuming you. I would suggest a bit of time away if you can find anyone to fill in for you. Both of you can go to a support group and you can
talk with other caregivers. Moving close to support from your family is not a bad idea, I couldn't deal with it if it wasn't for them and others at church.

Coach T

#29 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,231 posts
  • LocationSeattl, WA

Posted 28 December 2013 - 12:35 PM

tracyrose, early in my PD I felt so attacked by it and vulnerable. My mood swings the first two years were awful, especially when my husband acted as nothing at all should be different. His denial was strong, and my family's aversion to the idea that I might need their help astonished me. Luckily, I became involved with support groups early on, and had a psychologist to talk to every week. Now that I have more support, albeit from sources outside my family and husband, and have learned to be an advocate for my needs whether others approved or not, I feel more in control of my emotions that I ever did before PD took away control of my physical body. Coach hit the nail on the head. Find time away from the situation and get some support for yourself. It will strengthen you in untold ways! Best wishes!!!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#30 tracyrose

tracyrose

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationLA

Posted 28 December 2013 - 11:23 PM

I will be taking both of your advice (Beau's Mom and Coach T).. as well I reached out to my local support groups Supervisor to possible start a group closer to my home. My DH has also recommended that I just hit any "group" type meeting to distract my anxiety. Rick (DH)  is listening to my woes regarding his emotional state.. I am lucky that we are able to communicate today - sometimes we simply just can't. Thank you both and all. Good days and bad days are both ahead - hopefully this new yoga class I found on GROUPON will help as well. Respectfully, Tracyrose



#31 Ann15

Ann15

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 08 January 2014 - 03:12 PM

Thanks so much for this post.  I am just sitting here crying, I realize now I am not alone.  My husband has had this for 10 years

and he is just not the same man.  I am worn out just trying to fix everything, but realize I can't.  I think acceptance from

the caregiver is one of the biggest obstacles we all face.  We are also victims of this disease 



#32 Preacherlady

Preacherlady

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 11 January 2014 - 12:01 AM

Thanks for this discussion, all of you. My husband's personality has not changed per se, but the problems he was having before PD have intensified, especially the compulsive ones. Now he has a lot of anxiety, and worries everytime I leave him alone or step out of the house. He has always been a sweet man, but we get into more arguments now, and I hate that. I don't want our last years together to be so bitter. My husband is 83 and I am 65. We've been married for 23 years, and the last has been the most difficult.

 

Also, I see how he struggles with his walking, his speaking and writing, and in the other things he wants to do. It must be so frustrating for him. This is a man who ran 5 miles a day for years, even ran a half-marathon once. Now he has to take twenty steps to get across the kitchen floor. It tears me up when I see him struggle and fight this disease. He is so courageous, some would say stubborn, but he insists on doing as much for himself as he possibly can. So when I think of that, it helps me have more patience when he's feeling bad and doesn't act nice. God bless them all. And God bless us all who watch and wait, and care for these loved ones.



#33 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,231 posts
  • LocationSeattl, WA

Posted 11 January 2014 - 12:10 AM

I'm curious to know what meds your husband is taking for PD, Preacherlady. Some can create compulsions or make old compulsions worse.


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#34 Preacherlady

Preacherlady

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 11 January 2014 - 09:30 AM

He goes to the Gardner McMaster Parkinson's Center, here in Toledo. The chief of the center, Dr. Laurence Elmer, and the pharmacist at the center have worked with movement disorders for years. Dr. Elmer especially has headed research trials for many of the drugs used to treat PD. That said, as one member mentioned earlier, the focus is more on the physical issues rather than the emotional or cognitive issues. He takes a number of drugs which I don't know so well because he has always taken care of his pills. Words I remember are Azilect, Carbidopa/Levodopa, Sinemet, and Lodosyn. There may be another one. He takes these in various combinations 4 times a day. Also, he is not to eat protein an hour before or after his doses to increase absorbtion. Also recently the doctor added the Neupro patch.

 

So I know that with all that happening, he is sure to have side effects! I can't change that, but coping with it is difficult for both of us.



#35 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,231 posts
  • LocationSeattl, WA

Posted 11 January 2014 - 12:32 PM

Hi Preacherlady!

 

Carbidopa/levodopa and Sinemet are one and the same, with the first being generic and the second begin brand name. Azilect and the Neupro patch are a dopamine agonists and work differently. Agonists are the drugs that can cause compulsive behaviors in several areas. 

 

I find it sad that the focus is mainly on the physical issues than the emotional and cognitive issues. The latter are considered non-motor issues and are just as much symptoms of PD as are tremor and rigidity. And, they are more likely to have a negative impact on family members than just the physical symptoms alone.  I know my personality changed as my disease progressed until I learned that my depression and anxiety and irritability were also caused by the loss of dopamine. When I stopped blaming myself, I became less reactive and knew that it was probably nap time. Sleep is the only time that whatever dopamine our brain is still making has a chance to replenish.

 

There is now more focus on non-motor symptoms, which can appear years before the identifiable things like tremor and face masking occur and allow for diagnosis. Your husbands compulsivity may have been an early PD symptom. I have an OCD diagnosis, with a capital O for obsession, and less compulsivity. 

 

The following article was an eye opener for me:

 

http://www.mpbn.net/...onsDisease.aspx

 

Have a wonderful day!

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#36 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 679 posts

Posted 13 January 2014 - 09:37 AM

My life stopped 10 years ago when my mom got worse.  Now everything I do is for her and my needs comes second.  Truthfully I don't even know what I want anymore.  I just go with the flow and be thankful that she's still around to let me do things for her.  She has no idea what's happening nor does she communicate when she wants something.  I just do all the thinking and doing for her.  This is my life and I've accepted it.  I go to work and I come home and take care of her.  Time just flies and now I look in the mirror and see an old woman staring back.  People around me get married have kids and get promoted at work while I've stayed the same.  I actually see that as a good thing cause change might be worse so I don't wish for anything different if that makes any sense.



#37 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,231 posts
  • LocationSeattl, WA

Posted 13 January 2014 - 11:05 AM

miracleseeker,

 

Your description of your life sounds safe yet sad. If I could pour a little fairy dust into your life, you would have a sense of the wonderful self that you are, some relief caregivers so you can get to have a little fun outside work, and a great heaping portion of joy! I understand your fear of something different, believe me. I also know that my fear of things being worse meant I never took a risk that might bring about some good in my life. Which, thankfully, I became willing to take.

 

When you're ready, let's go see Saving Mr. Banks! Everyone around me is too busy and while I'd be willing to go alone, it's more fun with a friend!

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#38 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 679 posts

Posted 13 January 2014 - 09:00 PM

Thanks for your invite Dianne.  Saving Mr Banks?  Snooze!  haha

I watch a ton of TV thanks to my cable's library bank. Boring is good boring is rountine boring is safe.

I feel guilty if I'm not home with my mom.  She hates her caregiver but I cannot find anyone else strong enough to lift her and she also costs me an arm and a leg to watch my mom  while I'm at work.

 

Everything happens for a reason.  I think I was born to be my mom's lifeline sort of speak.   Maybe that's why I don't look like  a supermodel then life would really be unfair. :razz:



#39 mskita68

mskita68

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 19 February 2014 - 05:31 AM

This is my first time to this forum. My mom was dx with PD over a year ago. However the past 8 mths has been a lifestyle adjustment for me. Ee have had to adjust our living arrangements anf ive moved into the room next door to hers. This was due to fall she experienced and I didn't find her until the next morning.
My biggest challenge is the care needed at night. I work full-time and the getting up in three hour intervals is exhausting. My mom is 76 and suffers from incontinence. She wakes up trying to either change her depends or use the bedside commode. She doesn't ask for help however I can hear her struggling. The doctor has increased the mg for her vesicare and doubled the dosage of quetiapine to help her sleep and assist with the hallucinations. Everytime her meds is adjusted it works for 2 days and then she falls back into her normal routine of every 3 hrs.
Im looking for suggestions to assist with her at night. My lack of sleep is causing me to be irritable and less productive during the day. Also I feel like if I don't get a break soon away I will have a nervous breakdown. This is very challenging due to im an only child and I only have her brother who is a couple of yrs younger than her to assist me with her care outside of the homemaker who comes in 4 hrs a day while im at work.
Its 4am and I really needed a forum to vent to others dealing with this

#40 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,371 posts
  • LocationWashington, DC

Posted 19 February 2014 - 05:45 AM

I wonder if controlled release Sinemet medication might stretch out your mother's 'on time' and thereby her ability to sleep for longer intervals.  I believe it comes in 50/200 tablets.  Unfortunately, if your Mom's conditon is like mine, then four hours between re-upppng her medication is going to be the limit.  As noted elsewhere previously, a PWP cannot sleep unmedicated.  I assume you've attempted to have a heart to heart converstion with your mother about the absolute necessity of her maximum cooperation and that it has not been effective.  Best of luck to you kita68.

 

R.






0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users