[Corrie Trattner]

HI Everyone,

I really want to be part of this forum and caregiver’s group.  But I’d prefer if it was on this forum and not through my emails.

Thanks,

Corrie

[Corrie Trattner]

Hi Ally,

I am interested in sharing my story as a care-partner and as an occupational therapist (although I wasn’t his OTR/L) for my husband who died from Parkinson’s on March 6, 2021.   He also had other complications including Bipolar Disease and later dementia, vascular wounds, dementia, and visual problems.  He was officially diagnosed for 5 years, but I believe from my readings, etc. that he had it for at least 5-6 years prior to his diagnosis and maybe even much before that.  He definitly showed a lot of the non-motor symptoms, which apparently contradicted the treatment between the medical and psychiatric worlds.  Dealing with the medical system was extremely challenging in addition to all of the challenges Parkinson’s caused.  In addition, I found emotional support for care-partners to be sorely lacking.  Thankfully, I was able to participate in some very good support groups, but things became even more difficult once COVID started.

Sparing you from writing a “book” on this post, I would love to talk with you about this.  You can message me.

Thanks so much,

Corrie

[Corrie Trattner]

Hello Everyone,

My heart goes out to all of you.  My husband passed away from PD a year ago but he also had Bipolar Disease, vascular wounds, Lewy Body dementia, diabetes and other complications.  He was officially diagnosed in 2016 but from the reading that I had done and comparing the declining symptoms he had for many years, I’m quite sure that he had PD long before it was diagnosed.  He entered his first assisted living in 2015, had annual bouts of decline which landed him in the hospital and then rehab for gradually increasing lengths of time and only once was able to get back to his previous baseline.  After 3 and 1/2 years in one assisted living, he had to be transferred to a different one that was the only one in our area that had a limited medical license, so it was a step down from a nursing home.  They also had a dementia unit which he had to be transferred to a year later and then he passed away on March 6, 2021.

It was a very difficult, long, sad, and heart wrenching journey.  Although everyone’s path is different, I do have a good idea of what you all are going through, and again, my heart goes out to all of you.

Now that I am on the other side of the journey, I’d like to be able to help caregivers meet their emotional needs, as I found that to be sorely lacking throught the process, which got worse as my husband’s condition continued to decline.  Please let me know if I can be of any help to you all.

Blessings for strength, patience, courage, and resilience,

 

 

[Corrie Trattner]

My husband passed away from Parkinson’s, Bipolar Disease, and a host of other conditions a year ago on March 6, 2021.  I have to agree with Theresa.  Although I am a registered and licensed occupational therapist, I also was all of the other things that Theresa listed.  Many prayers and blessings to you all.

 

[Corrie Trattner]

My husband passed away from Parkinson’s one year ago yesterday.  I couldn’t believe the level of exhaustion I had been carrying because I was still working full time, have no family in the area, and could not hire additional help due to COVID.  Luckily, my husband was in an assisted living facility, as I could no longer care for his physical needs.  For months following his death, I could not stop sleeping, crying, being angry, unable to deal with estate or financial issues, or even send thank you notes to all of the people who were so kind to me during this most stressful time.  Now that it’s a year later, I can’t believe that I’m not constantly falling asleep all of the time, although that still happens on occasion.  Two things that helped me with the stress and continue to do so are listening to books on tape or my phone, and writing about my feelings and what was happening.  Watching my dear husband decline was heart rendering and draining, but the journaling and listening to books did help.

In his honor, I hope to help meet the emotional needs of caregivers.  If people have ideas about what they need or wished they had had, please let me know.

Thanks and blessings to you all,

Corrie

 

[Corrie Trattner]

Unfortunately, none of us have a crystal ball to know what will or won’t happen when we are first diagnosed.  When my husband, who has now passed 5 and 1/2 years after getting his diagnosis, was first exhibiting symptoms that were drastically affecting his life, we went through several doctors who didn’t believe anything was wrong as they looked at his walking for 2 seconds and said he was fine.  ]

Since my husband also had Bipolar Disease and was on Bipolar meds for decades, I do believe that was a major contributing cause to his developing Parkinson’s.  Unfortunately, I have only found 1-2 articles that suggest that could be the case.  It would have been very helpful to get the right diagnosis right away, as we certainly didn’t.  Then it would have been helpful had the doctors put him on an exercise regieme, so that we would have had something more specific to follow as opposed to trial and error.  As much as it’s important to become aware of what may be coming down the pike as the disease progresses, it’s also important to know what to do now and at each stage as the furture stages occur.

If there are others out there interested in getting more help, especially emotional support for caregivers, I’m all ears.

Thanks

Corrie

[Corrie Trattner]

Hi from Corrie,

Longmeadow, MA USA

 

[Corrie Trattner]

Hi from Corrie,

Longmeadow, MA USA

[Corrie Trattner]

Dear Sandy,

My heart goes out to you, as I must confess that I felt many of the same volitile emotions.  There were days when I tackeled everything and essentially tried to hold a stiff upper lip while other days I was totally overwhelmed, angry, distraught, and besides myself.  At those moments, not only did I not know what to do with myself, but thought that I wasn’t going to make one more minute.  Somehow I did, as we all do.  Essentially, we do what we have to do as best as we can.  I’m not usually a person to ask for help and often would get angry when people would tell me to be sure to take care of myself.  “They are not in this situtation and don’t understand what it’s like!” I would say to myself in a most frustrated state of mind.  Fortunately or unfortunately, the fact is that both statements are true.  Nothing like being stuck between a rock and a hard place.

If I had some pearls of wisdom that would make everything OK, I certainly would share them with you.  However, if he is still mobile and can walk, get up and down from a chair, get in and out of a car, feed himself and take a shower, you are still way ahead of the game.  My husband loved to travel, which I had to discontinue because it became just to hard to manage him with everything being out of our routine.  In hindsight, maybe it would have been better had I hired people to travel with us, although I don’t know if that would have worked out well either.  My only suggestion, if it’s even of any value, is to try to enjoy every minute that you can whether it’s travelling or just sitting in front of the TV watching Netflix.  You’re right to keep him moving, as any kind of exercise, even if it’s unofficial, will help to keep him at his current functional level.

Just try to remember that you really are a super-super coper and are doing a collosal job.  I hope this was helpful.  Otherwise, hit the delete button.

Blessings and G-d be with you both,

Corrie

[Corrie Trattner]

My husband passed on March 6th after 5 and 1/2 years of continual decline after we finally were able to get a diagnosis.  That doesn’t count the years of decline leading up to his having to go into rehab and then into an assisted living.  I have to agree with the person who said that Parkinson’s is a theif taking away everything bit by bit.  I remember one day standing in the parking lot after seeing the dermatologist who told us that his skin breakdown on his hands was due to the Parkinson’s screaming to the sky, “What else is this damn disease going to rob from us???!!! – even his skin!!!”  That was about 4 months before he passed.  Sometimes I wonder how I coped, but often I would pray and hum spiritual tunes to myself and sometimes sing them outloud when I was at home alone.  That seemed to help.  I don’t know if I felt relief when he passed, but I was grateful that his suffering had finally stopped.  Daily I pray that he’s now at peace and happily reunited with his brother, parents, and our first grandchild.

When I feel less overloaded, as I’m finishing up my full time job of college teaching after 30 years to retire at the end of the month, I hope to help develop and provide services for caregivers.  There is a sore need out there for us caregivers or carepartners and I’m open to any and all suggestions.

Thank you and blessings to you all,

Corrie

[Corrie Trattner]

My heart goes out to all of you.  My husband passed from Parkinson’s and Bipolar Disease on March 6, 2021.  He was in assisted living facilities for 5 anf 1/2 years and progressively got worse as time went on.  He also was getting sick for many years prior to his entering the assisted living when none of the doctors could diagnose what was wrong.  In addition, which was really madening, the physical and psychiatric doctors refuse to talk to each other, which made things all that more complicated and difficult.

Many of you stated above that you are fearful of what the future will bring.  I had the same feelings despite my being an occupational therapist and working with people with physical disabilities and mostly psychosocial issues and mental illness throughout my 50 year career.  It’s different when it’s your family member whom you dearly love than when it’s a client of yours.  I continued working the whole time so that we could stay on the health insurance and so I could have somewhat of a break from caretaking.  However, being a college professor really didn’t give me much of a break.  (I’ll be retiring at the end of this month).

I can miror your feelings of frustration, anger, exhaustion, and guilt.  Sometimes, I still feel all of those.  I think the hardest things for me were the worry about what was coming down the pike and how I would deal with it.  Every day I would pray for the strength to see everything through until the end.  Somehow, with G-d’s help, I did, and assuredly all of you will too.  Some of the hardest things for me to deal with was accepting that I couldn’t do everything and had to get help as his condition worsened and that I couldn’t make everything better and go away like I would have liked to do despite all of my extreme efforts.

My heart goes out to all of you.  Please try to remind yourselves that you are all strong and caring people and have more resources and reslience within yourselves than you realize.  I send you all prayers of healing and comfort and quality of life for yourselves and for your loved ones.

I hope this is helpful.  If not, hit the delete button.

Corrie

[Corrie Trattner]

I’m a caregiver and not the person with Parkinson’s; my husband is.  Although I can’t get any straight answers from the doctors, I think he might be entering end stage, as he’s bed ridden, needs to be fed, and his voice is barely audible.

I, too, have wondered more frequently than not what the purpose of all of this decline and suffering is that G-d is putting us through.  There have been times when I think I must have done a ton of very awful things unknowingly throughout my life to be punished in this manner to watch a loved one decline so much and not be able to stop it.  Then, other times, I realize that my poor husband is probably suffering far more than I am.  But I truly believe that G-d doesn’t give you what you can’t handle.  I also believe that the challenges he gives us earlier in our lives is to strengthen us to deal with new challenges that will be coming later in our lives.  When I reflect on my life, I can see how earlier challenges lead me to be able to deal with my current ones.  My mother, may she rest in peace, a blessed memory, used to say two things: 1) G-d may not come when you want him to, but he’ll always come on time, and 2) if you feel that G-d has taken with one hand, he gives with both.

I’ve recently started taking a daily prayer practice course for a month and have been trying to talk to G-d our loud about the meaning and purpose in all of this Parkinson’s stuff, watching a horrible decline, feeling incompetent to change the course of things even though I know that it’s a progressive, incurable disease, and feeling guilty that I haven’t done enough even if my rational mind knows better.  Like several of you have said above, He doesn’t answer us verbally, but He does know what he’s doing and this all will be for good.  Perhaps my challenge now if to see the current and to anticipate the good with gratefulness and faith.  “Let go and let G-d,” because He doesn’t give you anything you can’t handle.  And as I heard from a Parkinson’s Caregiver at a conference, “Everyday is a gift; every day is a gift; every day is a gift.  Now repeat.”

Thank you for listening and blessing for peace, comfort, and strength in all of G-d’s wisdom to you all,

Corrie

[Corrie Trattner]

HI Cindy,

I hope that you’ve been able to get and give yourself some R & R.  I can relate to what you are saying when it comes down to feeling as though caring for yourself is just ONE MORE THING.  There were many times that I wanted to strangle people who told me to be sure to take care of myself, especially when it was one of the “crisis” times.  It’s really hard to figure out what to do when all you can do is sit on the couch and stare at 4 walls or the ceiling.  If that’s what you need to do, then do it, and give yourself full permission.  One of my strategies is having the TV on whether or not I’m watching it just to feel as though I have company in the room and the escape when needed.  It’s amazing that I don’t have episodes of Criminal Minds, SVU, and NCIS Los Angeles and New Orleans memorized verbatim with all of the repetition.  However, one thing that I do find helpful if listening to books on CD or audio on your phone.  I drive an hour round trip to see my husband in the assisted living, and many times the books on CD were the only thing that held me together.  It gave me the opportunity to feel productive while being distracted and still doing the main things that really needed to get done for the day.

I hope this helps.  Take care and sending healing vibes,

Corrie

[Corrie Trattner]

HI MaryBeth,

 

Thanks for your reply.  I definitely agree that getting out into nature would do much to reduce one’s anxiety.  However, as lovely as a two hour mindfulness walk sounds, I don’t think I’d be able to fit it in more than once a week if that.  Perhaps other’s have more flexible time to do so, which I agree, would be highly recommended.  I also agree that what we eat can help our mental as well as our physical health.  There definitely are foods that are comfort foods and those that help to alert the sensorium.  Would be good to talk to a knowledgeable dietician on this.

Thanks for your suggestions.

Corrie

[Corrie Trattner]

This is a very difficult question to answer because it depends what stage of Parkinson’s the person is in and also how many additional complicating and co-morbid conditions are continuing concurrently.  During the “crisis” times when things get worse, or suddenly much worse, it’s hard to do anything but care for the person with Parkinson’s.  During the “quiet or down times” it could be a bit easier, but I find myself often waiting for the “shoe” or “other shoe” to fall.  People often are helpful during the crisis times, but not necessarily available during the quieter times.  So, for me, I’d like information on how people deal with their anxiety, stress, and prolonged grief.

Obviously, the above doesn’t answer the question.  I can share what I tend to do now, but it doesn’t eliminate the sadness; rather often these strategies are only a temporary distraction.  However, to be fair and to try to answer the question, this is what I’ve done successfully so far:

1. Listen to a lot of books on tape.   2. Got into a writing group.   3.  Pray and go to services and spiritual-religious study groups   4. Attend Parkinson’s and caregiver’s support groups  5.  Attend dance class   6. If time and I’m up for it attend lectures (one night) or short (1-3 sessions) craft-art classes.   7. Watch a lot of TV and fall asleep on the couch   8. Keep in touch with family and friends as much as possible.  9. Continue to work full time which can be helpful and stressful depending on the day. (Husband is in assisted living).

Again, this probably sounds good on paper, but my anxiety, sadness, and grief is pretty constant.  I really have to work at quieting those feelings.  If anyone has other and better suggestions, I’m all ears.

A friend put it very well.  He said, “First I though we had to stay ahead of this.  Then it became just trying to keep up with it.  Lastly, it was it is what it is.”  I think of that a lot, which sometimes gives me some comfort.  Thanks so much, Jeff (person who made the statement).

Hope this was helpful.

Corrie

 

 

 

[Corrie Trattner]

Hi Mary Beth,

I’ve been thinking about you and hope that you are able to find some peace and comfort and are able to reflect on times when they seemed just perfect with your dad, especially during this holiday season.  Remember to take care of yourself and see yourself as a devoted caregiver who deserves and has earned well deserved TLC.

Sending you positive vibes and hugs,

Corrie

[Corrie Trattner]

Hi Mary Beth,

Thanks for your response.  I agree that it’s hard to discuss the caregiver issues because, at least for me, it’s hard to ask for help and hard to expose feelings that others may not understand and end up being judgmental in their failed attempts to be supportive.  Plus the expectations from our culture to be independent, I find, makes it even harder to ask for help even when it’s legitimately needed.  I find the unpredictable nature of the disease particularly difficult to deal with, as I feel that I can’t make commitments to do things that would help me feel better because I never know when I’m going to get a “call” from the assisted living.  So, I’ve found myself not planning to do activities more than a week in advance, because I don’t know what is going to be happening with my husband at any given time.  My only thought is to do as many and as frequently stress relieving, enjoyable, and meaningful self caring type activities that you can that are short and can be done in varying intervals.  That way you’d have the choice of which you activity (ies) you’d want to and could pursue at any given day, or time.  Please feel free to write your thoughts.  Undoubtedly, they will be helpful to everyone, and to you, too.  Since you are a columnist for this column, no doubt that your writing would be to the point, very expressive, and sincerely felt by everyone.  Thanks so much again for providing us with this opportunity.  Corrie

 

[Corrie Trattner]

Not sure where to start in this discussion.  My husband officially has had Parkinson’s for 4 and 1/2 years but assuredly it has been much longer prior to the actual diagnosis.  In addition to watching his motor, non-motor, and cognitive skills decline, I think the greatest cost is the loss of the emotional support that he used to be able to give.  Although he’s still the caring person that he always was, he’s no longer able to express it either verbally or non-verbally.  Much of the time he’s very sleepy, repeats a lot, doesn’t really carry on a conversation except within very repetitive, limited interests, and our communications essentially can’t be more than a few minutes and often only a few sentences at a time.  He also has bipolar disease, diabetes, vascular, blood pressure and thyroid issues, glaucoma, and insomnia for which he does cat naps all day long.  Recognizing how much he has declined in 4 and 1/2 years not only blows my mind, but gets very depressing, sad, and at times maddening.  Sometimes it’s hard for me to separate my anger to keep it contained to just the disease as opposed to being angry with him, too.  Some of the most challenging issues for me is the up and down nature of the disease so that I never know when he is going to have a good day or even a good hour, and seeing sudden massive declines in function from which he never really recovers despite the amount of physical therapy he might be able to get for each episode.  In addition, the struggles with the insurance companies, the rehab departments at each hospitalization and home care therapies to keep him on service, myriad of doctors appointments, and doctors not seeing the dips in function in the 15 minutes they spend with you are highly frustrating.  Many times I find myself praying that I will have the strength, resilience, and fortitude to see this disease to the end, as things will become even worse than what they are now.  With no end in sight, I freak out about the huge financial cost since my husband has had to be in an assisted living this entire time.  I continue to work full time for financial reasons and to keep my sanity in an effort to have some sort of balance in my life.  Furthermore, when I had tried to keep him home, he would  call 911 several times a day because I might have been 5 minutes late from getting things he needed because of traffic or lines at the cash register.  There were many days that I came home to finding the EMT’s at my house because my husband was petrified and many other days that we had to call the EMT’s because I couldn’t pick him up when he fell or because I couldn’t always get him up and down the stairs or in and out of the bathroom, etc.  At times I get really angry when people say to be sure to take care of yourself when being a caregiver can be a 24/7+ job, especially during the “crisis” times.  It gets even harder with each episode when I suddenly have to do even more juggling to be sure that work is covered because doctors won’t return your calls, or expect you to be at hospitals, rehabs, and skilled nursing facilities during the few moments they might be there after you’ve waited for them for hours.  I’ve had experiences where nurses told me on the QT when the doctor makes his rounds so that I could get literally 2 minutes to beg him to write in his notes to continue physical therapy so the insurance company wouldn’t discontinue treatment.  Needless to say, the entire process and it’s long downward spiral are extremely emotionally draining and physically very exhausting, especially when I have no family living near by.

Despite it all, I would like to work to improve the lot of caregivers, as we caregivers are a much under-served and much unnoticed population.  Thank you for listening and for this opportunity to voice some of my feelings and concerns.

Corrie T.

[Corrie Trattner]

There are adult tricycles that also have a basket to carry things.  You won’t go as fast as on a regular bicycle, but it may be an alternative to not biking at all.  The need to balance oneself would be much less.  I don’t know if there is a place where you live where you can try out adaptive bikes prior to purchasing one, but it may be something you can investigate.  There is an organization in Western MA called “All Out Adventures.”  They have several different kinds of adaptive bikes.  Perhaps you can look them up on line and get suggestions, especially if you don’t live in this area.  Good luck and stay positive.  I think the bird sanctuary sounds fabulous.

 

[Corrie Trattner]

Hi Diana,

Thanks so much.  I look forward to hearing from you.  Somehow, I may have accidentally blocked notices from Parkinson’s News and am trying to figure out how to unblock it.  I know that you said that you will be reaching out to everyone next week, but just in case, feel free to message me.

Thanks so much again,

Corrie

[Corrie Trattner]

Hi Marjorie,

Sorry that it has taken me so long to answer.  Acutally, I just noticed your answer and gracious offer the other day.  So, my sincerest apologies.

I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project.  There just wasn’t enough time, and I think we undertook too much.  We had to cancel the contract after several years.

I was considering several professional articles now that I’m retired.  However, I’d love to talk with you  about the possibilities, especailly since you are an author.  Why don’t you email me on my home email and maybe we can find a time to talk on the phone or email each other about this, so that we’re not taking up people’s time on this site.  [email protected].

Would that be OK?  Thanks so much,

Corrie

[Corrie Trattner]

Hi Marjorie,

Sorry that it has taken me so long to answer.  Acutally, I just noticed your answer and gracious offer the other day.  So, my sincerest apologies.

I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project.  There just wasn’t enough time, and I think we undertook too much.  We had to cancel the contract after several years.

I was considering several professional articles now that I’m retired.  However, I’d love to talk with you  about the possibilities, especailly since you are an author.  Why don’t you email me on my home email and maybe we can find a time to talk on the phone.  [email protected].

Would that be OK?  Thanks so much,

Corrie

[Corrie Trattner]

Thanks so much, Jean for your kind words of support. I greatly appreciate it. Corrie