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By NoMatterWhat On 2021.08.30 13:21
I am new to this. My husband was diagnosed this year and life has changed so much. He is doing remarkably well though that statement is based on an entirely new set of expectations. It is all so overwhelming when coupled with my mother’s worsening Alzheimer’s and my father’s pancreatic cancer. I needed to tell you all how much you have helped me just by your posts. I am open to any comments-especially those to help me cope. Thank you.

By SparkysGal On 2021.08.31 07:38
Welcome. Sometimes the posts here are sporadic, but you will gain a lot insight from past posts and discussions.

By Checkmate On 2021.08.31 18:46
Glad you found us. My husband has Parkinson’s 20 years now. It’s only in the last 6-10 years that things got a lot worse. He is in long term care now over two years. This site has got me through many bad days. You are not alone.

By NoMatterWhat On 2021.08.31 20:42
You two have no idea how heartening it is to have received your caring responses….wait, yes you do! This forum is so needed and welcome in my life. You are right, it does appear a bit sporadic but I feel the warmth and I appreciate that you answered my need for your help. I don’t know what to expect. My husband suffers from rigidity and fatigue along with the rest of the symptoms. I don’t know how fast this will progress. Although I try to take it in stride, I am concerned how this will progress.

By SparkysGal On 2021.09.01 08:05
Ever person's journey with PD is different. My husband is one of the lucky ones. He was diagnosed at 46 and is now almost 69. The disease has progressed but is mostly managed with meds. He has some stiffness but tremor is his biggest problem. He also has a multitude of other health issues that will "get him" before PD according to his neurologist. So glad you found us.

By NoMatterWhat On 2021.09.01 13:38
Thank you for your information. I have heard about everyone's journey with this disease being different. I am glad my husband is doing so well. He was diagnosed this year but I know he has had it for years. The diagnosis answered so many questions. Let me ask about driving. How have you all handled this? I have heard that Parkinson’s can change the person’s response to something; that they can think they are pushing the brake heard enough to avoid a collision but in reality they are not breaking as hard as they think they are. I am also concerned about the meds causing him to fall asleep without warning. So far that only happens when he is in his recliner but the thought of it happening elsewhere scares me.

By SparkysGal On 2021.09.02 07:29
my husband's driving habits have changed over the years. We used to have all manual transmissions in our cars. He got so he couldn't do the shifting because his leg would start shaking. We now have all automatic transmissions. He used to be a speed demon and very aggressive - now he's slowed way down and is much more cautious. Fortunately he seems to know his limitations and not everyone is like that. He told me - "there will come a day you will have to take my keys" The biggest difference I see with his driving is that he used to have a keen sense of direction and that is totally gone now. He easily becomes confused and gets lost, especially going anywhere that is new. That's what concerns me more than his driving ability.

By Checkmate On 2021.09.02 12:05
My husband stopped driving over 10 years now, once he started to hallucinate. Although the hallucinations stopped for a few years it was too dangerous to take any chances. We always renewed his license (just for pride) sake. This is the first year that we haven’t renewed as he has delirium now and is not aware it needs to be renewed. He still believes he can drive and often offers to drive !
Having a good specialist (neurologist) and psychiatrist that work together have been a fantastic support for us. Parkinson’s meds can have many side effects that need watching.

By poollady On 2021.09.02 18:11
My husband just celebrated his 80th birthday. He just went to the BMV and renewed his driver's license a couple of days ago. He only drives about a mile from home to either have lunch with his buddies or to see a doctor down the road. Other than that either myself or our son drives. Hopefully things will be OK.

Good Luck to all of you!

By NoMatterWhat On 2021.09.02 18:42
I couldn’t wait to see you responses-thank you all so much for sharing you experiences with me. I already feel like we are friends. You are all so appreciated and valued!

By lurkingforacure On 2021.09.06 14:55
Dear NoMatterWhat,

I am a former PD caregiver, and this forum saved my sanity when I was actively caregiving for my husband. I have been where you are, and honestly, we all kind of have to find our own way of coping, as what works for one may not work for someone else. It's like cooking: someone's favorite family recipe may be met with hunger strikes by your own kids when you try it at home:)

I think one of the hardest caregiving jobs is to try to make the most of our days with our loved one, in spite of all the chores of "regular" life and the PD unpredictability, worry, and stress: to make them feel loved, safe, and secure, even as our world is hopelessly unraveling and we are struggling to hold things together.

On some of my darkest days, I imagined that my husband and I were in a small boat on a stormy body of water, utterly surrounded by deep and dark rushing waters that we had no tools or means to navigate out of or even around. We were stuck in it. Of course the stormy waters surrounding us was PD. I would visualize us heading towards shore in our little (and increasingly) battered boat. The shoreline was far away, but faintly visible, and I would tell myself that we would get there, that all we had to do was hold steady and together, brace for each wave that we could see as it came crashing against us, and hang on for the ones we could not (there are so many unseen waves in PD). I recognized and tried to accept that we might be blown off course, even pushed further away from shore at times, but I kept the image of that shoreline in my mind. I don't know what this kind of coping mechanism is called, but it helped me.

As you're holding steady through your own PD storm, I would suggest that you make the most of your husband's (currently high) function. Travel if you can (COVID, money, work allowing) tackle that bucket list, take tons of pictures to reflect on later, make those connections and memories that will give you additional strength in the years to come if no cure is found. Has your husband always wanted to play a musical instrument? Now is the time! Learn another language? Now! Hone his photography/woodworking/whatever skills? Start today! You get the idea.

Be flexible and roll with the inevitable and chaotic PD punches. Be prepared to take over more and more of the things your husband has done pre-PD: finances, house maintenance, help with kids homework, etc. Research as much as you can and be a strong advocate for your husband at the doctor's office-he cannot do it himself. Take notes between visits so that you can review them before an appointment and bring up any issues that came up since the last one.

And remember: even though he may not express it, your husband is profoundly grateful for your constant love, kindness, and support:)

By lurkingforacure On 2021.09.06 15:19
On the car: again, different for everyone. In my case, I just took the keys away when my husband wasn't looking. I had been doing all the driving for awhile anyway, so it wasn't a big deal at that point.

Later, when he would tell me that he wanted to drive somewhere and wasn't satisfied with me offering to take him, I would tell him that the doctor said he could drive again as soon as he passed the driving test at the state department of motor vehicles (this was basically true, although even if he somehow managed to pass the state test, our neuro still did not think my husband should be driving). My husband always dropped the topic at that point, because I think he knew, deep down, that he would not pass the test.

I can still see the look in his eyes as he processed my answer, and realized that he would not be able to pass. It was heartbreaking.

There are lots of posts here about the whole driving issue, I would recommend that you read past posts to get ideas on what has worked for others. Good luck.

By VioletV On 2021.09.09 21:34
Lurking
You have summarized life with PD so very well. Live your life until PD stops you--and hold on as well as you can to each other.

Thanks
VV

By NoMatterWhat On 2021.09.12 19:46
Hello, Lurking (and my other new friends)-

Thank you so much for being there and responding to my questions. Your insight and suggestions are appreciated. I know I am only just beginning this PD journey (although we are sure he has suffered with it for years without an actual diagnosis). I understand that he is high functioning and I can only imagine what we will end up going through. My husband has gone from someone who is strong and quick to taking meds all day long, tired by walking down the driveway and not clear headed enough to understand the tv remotes sometimes. I understand that we have so much to be grateful for. I wish I could travel with him. He is older than I am and I am still working. I am trying to be a successful business woman while thinking of my husband at home alone. I am trying to handle this delicate balance of financial concerns against his happiness and his needs. I feel that I must make what money I can while I am able. I would like to be able to afford what little he asks for while he has the desire to do anything. I plan on stopping when we decide that he needs care and help beyond what I can do before or after work. We feel we may need to put on an addition of a bedroom and bathroom downstairs and I need to make sure I can pay for it. He has been sleeping in his recliner for years because it was too painful to lay down in bed. I did not want him to be alone so I have been on the couch for years. I feel so ashamed about it. I guess I don't know why. It is what it is.

Thank you so much for responding to my messages. I reached out to this forum when I felt that I could not wait one more day for help. Your thoughts mean so much to me. I do understand that our journey will be different from anyone else's but to understand your coping mechanisms is so very helpful. I understand the storm analogy. I can use that too. I will think of it when I feel another wave hit.

VV- I am going to try to use caregiver supports as I go along but at this point, I was able to reach out to this forum because it is anonymous. I feel it is perhaps disrespectful to express the hard times I have with this disease and my husband. He does not ask for anything. He could not be a more kind, loving, giving soul. I feel a bit ashamed to be reaching out though I know it is due to my own weakness, not his.

Once again, thank you for continuing to be in touch with me and yes, I will read more of the older posts to help me along. Thank you.

By junipersage On 2021.09.13 14:35
I really empathize with you on the confusion your husband has sometimes. My husband also has good days and bad days, times when his thinking is much clearer and other days where it is more of a struggle.

He is a computer guy and always loved his tv, has a complicated set up with the tv, dvd, Netflix, and all of that. I don't know how to operate any of it because never cared about it, that was "his" domain. Now some days he is fine but other days he cannot watch his shows because he can't remember how to navigate the menus to get to the things he wants to watch. He also loses the (many) remotes frequently or can't remember which one does what. I try to label them when I can but I have to catch him on a day where he knows where they are and can tell me what they do!

I think if your sleeping arrangement works for you, then give yourself a pat on the back for figuring out a workable solution. As long as everyone is sleeping that is all that matters! Currently my husband and I sleep in the same bed but he often has "active" dreams where he thrashes around or screams. We switched sides so that I am on his left side, because usually if he swings his arm it will be his right one, that way he just ends up hitting a pillow or the dresser. But last night when it happened again we did have a middle of the night discussion about eventually needing separate beds. He was shouting and cursing in his sleep and I don't know if he felt worse about thrashing around or about the cursing, something he would never do while awake! He kept apologizing and wanting to promise he would never do it again but of course he knows he cannot promise that because he can't control what happens when he is totally asleep. It made him feel helpless and guilty and he went off to work a bit sad this morning. He still works full time but I think that is rapidly coming to an end. We are just trying to figure out if and how to claim long term disability, and then maybe he can stop working by the end of the year. He actually loves work and doesn't want to leave but he has confusion there too and is having a hard time.

Sounds like you have a lot on your plate so sending lots of supportive thoughts and ((hugs)) your way.

By NoMatterWhat On 2021.09.13 19:18
Hello, Junipersage!

Thank you so much for your message. I really appreciate knowing where you are with all of this. My husband is retired but does a small job on the side twice a week for just an hour or two at each visit. It seems just the stress of knowing he has to go can sometimes be enough to keep him from sleeping well, not to mention if there is a problem. He can handle it but it is the stress of the situation that is more than I want him to deal with.

Thank you for you pat on the back about the sleeping arrangements. I guess it is a sensitive topic for me because of everything else it means: when our kids come visit they have to leave before we go to bed rather than us going up to bed to listen to them talk and laugh their way into the night, the lack of intimacy.... it is a good thing I married my best friend... there is enough without it but I have to recognize that it has been so many years.... I feel so bashful for anyone to know about it. I guess the diagnosis "justifies" the situation. It really started so many years ago when he would act out his dreams. Not just any dreams but the vivid, violent, scary dreams PD seems to bring.

I have to say, both of my parents are at tipping points with their own illnesses of cancer and Alzheimer's. There will be so many hard realities to deal with very soon. I just want to prepare myself as much as I can.

Thank you all for sharing and accepting me into this group. I appreciate you all so much!

By NoMatterWhat On 2021.09.20 19:18
Hello, again.

How can I find more patience? Life pulls me in so many directions. I love him so. I wish I was more patient and I wish I was more capable. I would just like to hear from any of you. Thank you for being here after a long day.
NMW

By SparkysGal On 2021.09.21 08:31
I'm glad to hear you are out of patience too! I hate coming home from work to some problem or issue with my husband. It takes him sooo long to do anything and I know he needs to do for himself as long as possible. But some days... I used to have to almost run to keep up with his long legs and now I have to wait and wait and wait for even the simple things, like getting out of the car. He doesn't want assistance and he can do it but, oh my. I've learned to just sit in the car until he is standing, then I can exit and be by his side by the time he's ready to start walking. My daughter recently lost her husband suddenly and she lives out of state so we have been on the phone a lot. My parents are elderly and a worry, so I understand the multiple pulls in all directions. Some days I don't feel like I have anything left for anyone and I end up being short with my husband over the things he has no control over. ~sigh~ I'm getting ready to retire myself so their is stress with that too. I wish I had words of wisdom for you, but I find just knowing I'm not alone with these feelings helps a bit. :)

By poollady On 2021.09.21 13:20
I know just how you feel. It's really hard to be patient. He keeps saying "What's your hurry?" I'm not in a hurry, just trying to wait for him. Saying "Supper's ready" is meaningless to him. We can be sitting at the table with forks in our hands, then he finally notices and comes to the table. Like you (all of you) I love him so much I don't want to complain, but some days are really hard.

I appreciate this forum as a place to vent. Just knowing that others are going through the same thing helps a lot.

Keep you chin up and find a way to keep yourself busy.

By NoMatterWhat On 2021.09.21 20:16
Hello!

Thank you all so much for sharing. It does help to know that I am not alone feeling like it is hard to wait, hard to be patient and to feel bad about the stress it causes. I am so lucky because he is not really bad off but he is not who he was. I feel so torn by what I see "today" and what it means for "tomorrow".

I thought about you all today and realized how glad I am to have you. I looked forward to your replies and this really helped me over an upsetting couple of days.

NMW

By junipersage On 2021.09.22 17:01
I agree with you about feeling sad both about what is today and what is coming tomorrow. In psychology it is called "anticipatory grief" - you are already grieving what you anticipate to come. This weekend we went away for one night to a local bed and breakfast and had a wonderful time, although it can be hard for him to sleep in an unfamiliar place. At the same moment we were having a great time I kept fighting off this little thought creeping in, "How many more times will we be able to do this? Is this the last time? I hoped to have more experiences like this once we retired, but perhaps that is not to be..."

I try to remember the Leo Buscaglia quote: "Worry never robs tomorrow of its sorrow, it only saps today of its joy." - but it's hard not to feel that sadness when you know what may be coming.

One of the things that makes me feel alone sometimes is that like yours, my husband is "not really bad off", and so many people around us don't notice a difference in him. Yes, they can see he has trouble walking or is slow, but he speaks well and personality-wise they can't tell. But I can. So they tell me they are glad he is "doing so well" and I /am/ glad but at the same time I feel like I am watching an image in a photograph slowly fade and lose all its detail, and I'm the only one who can see it. It's like a secret loss of something magic about our relationship, but no one else knows what I'm talking about, so there's no use talking about it to anyone.

Anyway, my heart goes out to you and with so much on your plate with your parents too. Do everything you can to line up assistance for the future, which you will surely need. Anything you can get settled now will help ease your burden down the road. Currently we are reviewing the bank accounts and any other financial thing to make sure my name is on everything and I have the account numbers and passwords. My husband lost our password book so we are slowly recreating them and I bought a new password book which will be tied to the desk with a string so he can't take it anywhere. We already set up power of attorney for financial and health care, in case I need to sign something in the future on his behalf. And my mom put me as a joint owner on her bank account so in case she becomes incapacitated I will be able to pay her bills and so on.

Sending you lots of ((hugs)) today.

By NoMatterWhat On 2021.09.22 19:26
Junipersage:

Thank you for your words and your care. I appreciate all you said and I feel I understand it all. Thank you for sharing such personal thoughts. I am right there with you. Your words, and those of the other friends on this forum, make me feel validated and like this is what happens to those of us in this position. I don't know why I feel I need your validation but it truly helps. Thank you for making me feel less alone.

NMW

By NoMatterWhat On 2021.10.03 08:24
Hello All,

I am again "just reaching out" while I struggle with things. Unfortunately, I am finding my own waves of anxiety, depression, anger, frustration difficult to deal with while surfing the waves of Parkinson's with my husband. Throughout all of this, I am trying to keep my head and heart above water while dealing with my own needs and feelings. I am signed up for counseling as I try to take a stand for my own well being. Honestly, I feel that you all are my biggest ally and I thank God for you all. In signing up, I said that I have this Forum that I have begun participating with. You all have helped me so very much.

I will get through this wave of anger and frustration. I have signed up for the meditation offered by VioletV. I found it very soothing and am looking forward to using it as I make meditation a daily part of my life. Does anyone else have any suggestions about what helps you stave off anxiety and depression? I am all ears.

Thanks, friends- NMW

By DaytoDay On 2021.10.03 09:56
Hello NMW…and welcome. I know being in a group like ours is something none of us ever wanted but here we are and we must deal with it….no choices in the matter. I am so glad you found supportive listeners. Your situation sounds pretty rough and we will try to help you. I am feeling a need to reach out too because my DH (dear husband) is moving into a more advanced stage of PD now after having been diagnosed in ‘12. Is having increased issues with, it seems, everything….talking, walking, eating, comprehension, etc etc…Had his 1st loss of large bowel in the night & I was so hoping this would never happen but hence it has & I must deal w it. So embarrassing for him. Guess I have to find diapers now. I try to be kind but OMG it is tough. He only thrashes in the nite infrequently & has only fallen out of bed about 4 times w no injuries. He knocked the clock radio into the wall and made a dent. We have been in separate bedrooms for years. Our big 30 anniv is coming up in a few weeks and we will probably go to a restaurant & barely speak.. This disease makes me so mad & I can never show it. So frustrating. The other wives on here have told you so many wonderful tips and shared on a deep level. So hope all of this helps u in some way and I’m sorry I’m not up to doing that today but I will in the future. Still feeling a little freaked out about his increase in symptoms. One good thing…We finally got the durable power of attorney notarized this week AND I made sure I am beneficiary on all funds. Living will has been signed by 2 witnesses as required in my state & he agrees to no feeding tube ever. So many things to deal with for the burdened spouses. We don’t have kids so I feel very alone sometimes. Relatives are one hour away and 2 hrs away. I’m wrkg on meeting more people in my rather budding neighborhood. They formed a women’s grp so that is wonderful. Good luck NMW!!! We’re all in this together. Oh, on driving….his general doc told me at last annual physical that he cannot drive and DH accepted that so I drive everywhere now. Dr told him his head doesn’t turn good enough and his right leg is too weak. So glad he is fine with it. He doesn’t want to endanger either of us so he knows this is what’s best. Love to all of you!!!!

By poollady On 2021.10.03 15:26
We all know exactly how you feel. My hubby has fallen down approximately once a day for the last month or so. He woke me up at 3:00 am this morning (we sleep in separate rooms) cause he couldn't get back into bed after getting up to pee. I don't mind helping him, but I'm just not very strong. Then this morning he fell on the couch after coming down the steps. I was in the basement doing laundry when I finally head him. Thank Goodness our son lives next door and helps whenever we call him, but I hate to bother him.

We just got back from a mini vacation at a beach resort, and he fell several times there. He has bruises and bandaids all over his arms and legs but I don't think anyone noticed.

Anyway all I can say is just hang in there and do the best you can and don't feel guilty for what you can't do. I just Thank God for every day I have with him and curse this terrible disease called PD

By NoMatterWhat On 2021.10.03 19:36
Hello and thank you so much for your attention to my post. I feel so sorry that I am complaining when you all have so much going on with this right now. I am here for you too. It has just gotten the best of me for the last day or two.
You are all so wonderful and I thank you from the bottom of my heart. I am appreciating all you have to say, not just what is directed at my questions or statements but the personal things you are sharing with me that teach me to appreciate where I am with him and cheer up. It gives me a realistic view of where things will go and I appreciate that. Where else would I be able to gain such important insight? You are all so brave. My heart is with you all.

So glad to be among friends here. NMW

By NoMatterWhat On 2021.12.08 19:25
Hello Friends:

My sweet husband and I just had our first appointment with a Rheumatology specialist who confirmed that he has Ankylosing Spondylitis which is an autoimmune disease with no cure. He is keeping his ever positive attitude for which I am so grateful. I have to say that I appreciated understanding that I am experiencing "anticipatory grief" because that seems to be exactly how I feel. It seemed to help me to hear it and to put a name to it. I will try harder to keep my chin up and appreciate every day while we have the quality of life that we do today. I need only look as far as this forum to be reminded that these will soon be 'the good old days'.

I am also in the worst of my mother's Alzheimer's. I had to call 911 on her and we had to take her to and ER because we could not have her attacking the aide. She is in the hospital and we have no idea where she will end up because she has vowed to try to leave wherever we put her. There are no beds due to Covid not to mention one for an Alzheimer's patient with dementia and aggressive outbursts. We have had to clear out her apartment and it would absolutely kill my mother to know that we have had to disassemble her home. We are trying to do the right thing by keeping her safe but this is so very heartbreaking.

Thank you for listening and letting me lean. I am appreciative of our friendship and the guidance and understanding you all provide.

One Day At A Time -
NoMatterWhat

By DaytoDay On 2021.12.10 12:56
No Matter What
I really feel for you. Your plate is certainly very full. Sure hope you have someone to help you deal with all of this. Do you have family around? I know that Parkinson’s alone is enough for anyone to handle and now he has a diagnosis that will complicate his situation. I too have a husband with two major issues. In addition to the PD my hubby also has had prostate cancer for 20 years. (He is 70). I remember thinking it was so terrible when he got that but it turns out after the surgery to remove the prostate, the meds have somewhat controlled it ever since so looking back I may have over reacted a little…but then again, at the time, you really don’t know how bad it is going to turn out to be with any given disease.

Try to just move forward having faith that you can handle whatever happens and just remain calm. Being super stressed out and worried doesn’t help matters. I get more and more concerned everyday now that hubby seems to be progressing at a faster rate. The holidays have ALWAYS been hard on him so everything (all of his symptoms of slowness, low cognitive abilities, etc..) gets worse. Sure hope things get better for your mom too. So hard for all of you and HER. Please take care of yourself.

By NoMatterWhat On 2021.12.14 19:55
Hello again, friends:
Feeling grateful for you all today as I mentally held your hands-got a call today that my father, who is battling pancreatic cancer, had himself checked in to our local Hospicare. His wife was taken to a local nursing home for dementia a week ago and was not doing well at home alone. I did not know any of this. A lifetime of strained relationship between us was evident as I sat with him trying to carry out the most important of conversations without saying much. The fact that we hardly know each other was not something that any of us kids from his first marriage could ever overcome without him making it a priority. Today was a day, which was a long time coming, where I seem to feel a bit more at peace that it was not my fault, he made his family and his life without us. I was there, but I don’t know that it really much mattered… not really. It just is.

Still waiting to hear about placement for my mother. Also had a traumatic interaction with her nurses over a foolish misunderstanding. Cannot even think about it. Trying to move on. Holding my breath until she has a bed in a new facility. Our last conversation was full of completely disconnected partial thoughts. So sad.

In the midst of this…all of this… i am stepping away for 3 nights to visit my daughter out of town for a preplanned unavoidable occasion. Grateful beyond measure. Cannot let her down. Silver lining!

NMW

By junipersage On 2021.12.15 16:19
Oh my dear No Matter What, what a warrior you are to have so very much on your plate now and still holding it all together. I am glad you were able to stay centered with your father and release the things you could not control, then and now. Thank goodness he was able to recognize his limitations on his own and take steps to get himself to a place where his needs will be met.

I will be thinking about you and your mother and I really hope a placement will open up that will serve her well, even if she can't see it.

Many good wishes to you at your daughter's occasion. Lots of good thoughts that it brings you a bit of respite and peace. ((Hugs)).

By poollady On 2021.12.16 14:09
Dear NMW please know that we are all praying for you at this difficult time.

Just take it one day at a time and know that God is watching over you and your family.

By NoMatterWhat On 2021.12.18 07:55
Hello again:
Your words mean so very much to me.
My daughter’s functions were all cancelled after i got here just a few hours before they were to begin. She handled it beautifully and I did too-so glad for the break. I absolutely must tell you that my coworkers surprised me with a collection-many of them pitched in and i was presented with a card containing fun money to use during this trip with my daughter-because they know i need this trip so badly. Unspeakably kind, feeling such gratitude for my job and the collection of coworkers that apparently care so much- needless to say, I was blown away by thisbeautiful gesture. We have been ‘painting the town’ - bucket list “check!” It has felt like a dream, being my own person, sleeping in a bed, no medicine alarm at the crack of dawn. Missing him but not missing this opportunity, this absolute dream, I am in the middle of.
I received a call during dinner out from Mom’s Dr. we are now putting her on comfort care and i was told that she will not live much longer. I have to be at peace with that. I know her wishes well enough to know that is what she would want.
This visit with my youngest has made me feel stronger and ready to continue when I get home later today. Expectations and perspective. Thank you so much for your support.
Many thanks-NMW

By NoMatterWhat On 2022.01.29 23:08
Hello all-
I wanted to take a moment to tell you how humbled I am by my husband who has been stepping up to help me despite how challenged he feels at times and how I worry about him getting into things over his head. I have sustained a bad concussion and am getting my own turn at being slow, confused, in pain, needing help and being frustrated at my health. He is so patient and loving.

Thank you all again for being there.

NoMatterWhat

By poollady On 2022.01.31 14:20
So sorry NMW, hope you feel better soon. That's what true love is when one partner helps another even when they have challenges themselves.

By jcoff012 On 2022.02.01 19:34
My name is Jane and I was a regular poster here while Al was alive. I haven’t posted for the last year and a half, because after having open heart surgery last May I had complications that made both of us think I was dying (got pneumonia, heart failure and confined to bed in one of three hospitals—when I was sent to rehab, I was not able sit up. Walk, or feed myself!) After therapy I made it home the week before Halloween, but now I use a walker. There have been ups and downs, but just last week, I climbed 18 stairs to the bedrooms upstairs! With God’s help I plan to improve so that I can spend quality time with my husband.

I tell you all this to encourage anyone here facing some tough days ahead. I now know how a PWP must feel. It wasn’t til I got home that we talked about the depressing care and overmedication while in the third hospital, and the times we faced at times daily, of my dying. Again, try to remain positive as long as possible, it really helps. It IS true that I heard the love and care in my husband’s voice, although I could do nothing to respond, That is another thing I realize a PWP must go through. Try to be strong and caring. I do not remember much, but I do remember my husband pleading with me, “Jane, I don’t know where you are going, but come back. I need you, your family needs you.” That was while I was over medicated. I was given oxycodine, OxyContin, Norco, and Fentanol for several weeks, until my husband used his health power of attorney to get me out of that horrid place and put me into life saving skilled nursing rehab center. My husband saved my life; the therapists gave me back my life.

I want you to know there is always hope. The things you say and do ARE heard, and try to stay positive. Hang on to great doctors. Good ones listen. Great ones listen and give you concrete advice.

By DaytoDay On 2022.02.05 17:21
Hello Jane…I remember your posts from way back. So sorry to hear about all you’ve been going through. Thank you for letting us know that you were able to hear your husband through the fog of the drugs they put you on. So hard to know whether or not the doctors are doing the right thing for our loved ones. I guess we can just try to be as educated as possible and pray that God will help guide us at the time that it’s all happening. Sure hope you continue improving …we are all pulling for you. Keep the faith.

By VioletV On 2022.02.19 16:55
Jane,
I too am sorry to hear about all of what you've had to go through.

All sorts of joy to hear that you are mending and recovering.

Sending blessings,

and to NMW
Months ago you expressed some reluctance at acknowledging that this is hard for you. I'm sorry I didn't respond then-- I hope that it is not too late to say to you that acknowledging your own struggle does not increase his suffering, and your suffering in silence does not improve his life one bit. We hold each other up in this long journey. I don't know what i would have done during my husband's life without this group and others like it.

VV

By NoMatterWhat On 2022.03.04 00:16
Hello VioletV and all,
I have been unable to participate here as my concussion has left me still dizzy and struggling with horrible symptoms 6 weeks after my accident. I am relying so heavily on my husband who has done everything for us. He is my hero.
We have so much to be grateful for every day and that is all i can manage at the moment. Thank you all for being here for me. I feel all of the support you all provide and it makes me feel stronger to be here for you all too.
NMW

By NoMatterWhat On 2022.03.27 22:09
Hello again-
JuniperSage, I have re-read your note above and want you to know how very grateful I am for your heartfelt message about ‘anticipatory grief’ because I needed to learn about it and it has brought me peace of mind knowing what is happening and why I feel like this. I misremembered that it was you who taught me about it and I wanted to make sure you know that I realize and will clarify this in the other post. I am so appreciative and agree about your analogy of a fading photograph. No one does notice the change like I do and as you said, you just don’t talk about it. I think back on your post and feel less alone though I continue to grieve.
NMW

By junipersage On 2022.03.30 15:11
Not to worry, we are all having the same experience so I feel like we all have shared authorship on these posts anyways. I am continuing to hold you and your husband in my heart.

We continue to have our good and bad days and currently navigating my husband having retired on permanent disability in January. He is at home mostly alone now which is mostly fine and sometimes a problem. I am younger and was expecting to work for many more years and now it's not clear to me what is going to need to happen in the future on what timeframe or what I should be preparing for in terms of when I might need to stop working.

We did have a successful experience on St. Patricks Day where he agreed for the first time to use the wheelchair I bought for the days where he is not walking well. We went out to a street fair and on long walks he tends to get tired or may start freezing unpredictably and then it is very difficult to get back to the car. When we got there he did not want to take the wheelchair so I said fine, I will and had our daughter who is 22 push me around in it for the first hour. After that I could see he was tiring so I just stood up and said "want a turn?" and he sat down with no comment. That allowed us to stay longer and we all had a good time. I think over time he will feel less self conscious with it.

On a funny note, he often has those night dreams where he flails about (which is why I sleep on the left side, since he usually swings his right arm) but a few nights ago in the middle of the night he picked up my arm in his sleep and bit it like a corn on the cob. It didn't break the skin but it sure did wake me up! In the morning it was all I could do to convince him it really happened, haha. All the things you would never think to prepare for when you first learn about Parkinson's!

By PDNewbie On 2022.03.31 23:00
JuniperSage, I absolutely love how you handled the wheelchair incident! I’ve tucked your idea away in the back of my mind for future use.
We usually go to the zoo with our grandchildren in the summer and I just don’t think my husband can handle the walk anymore. It’s at least a mile all the way around with several very steep hills. I can picture him getting stuck at the halfway point with no way to get him back to the car. I don’t even know if I can handle both him and my preschool-age grandchildren without another adult.

The corn on the cob incident is a memorable one! I sure hope your husband doesn’t take a bigger bite next time! Take care.

By NoMatterWhat On 2022.04.02 01:08
Hello JuniperSage and all-

Your words about looking at your future and thinking how it will need to be handled is exactly what has been running through my mind lately. I am still home with him because of my own TBI -concussion injury and see that he has some new memory and cognitive decline. As I try to heal and envision being away from home I now know that I will need to call him at each medication time and listen to him take it. He had begun telling me that he has taken it when he has not. It is becoming more clear to me that he will need me to be home with him sooner than I had realized. I am going to have to keep an open mind and be ready to figure out how to manage on what we have. We are very low maintenance but making this work will be difficult. I will not qualify for Medicare for several years yet. My own health insurance would be hard to afford if I have to quit to care for him. I know that I will need to take care of myself so I can take care of him. The Dr just told us his spine has begun to fuse together in some places and will likely continue to do so, making his future care seem more daunting than ever.

I have gone on too long here. You just struck a chord with your note, again. Thanks for listening and, as always, I appreciate any advice.

NoMatterWhat


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