For those who care for someone with Parkinson's disease
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My 79 year old husband experienced balance issues during the last year with several falls. The worst fall occurred last summer. He fell face first on a concrete sidewalk and broke 14 bones in his face. A few weeks ago, my DH was diagnosed with PD. While I am grateful to finally have a diagnosis, I am scared. I know I should take things a day at a time, but I can’t help being concerned for our future. I am 67 and was hoping to travel and really enjoy my retirement. However, DH already has so many issues from PD that I am not sure that will be possible. One day last week, he did not have the strength to get up off the couch by himself. A few weeks ago at the end of a walk we decided to sit down on a bench and rest. As he moved backwards to sit, he started to fall forward. Luckily I was there to catch him. He only sleeps a few hours at night, but then “naps” all morning and part of the afternoon. Many days, he doesn’t even get up to begin his day until 1:00 or 2:00. It is difficult to eat out at a restaurant because he coughs and chokes on his food. Then, he gets embarrassed, which makes it worse. He also drools occasionally and doesn’t realize it. I am so sad and scared, but I also feel guilty and selfish for even writing this. I have been reading everything I can get my hands on and that has helped, but also made me even more fearful. I am so happy that I found this forum. I’ve read many of your posts and I feel like I know many of you already. You are all so kind and supportive to each other and that is gratifying to see. May God bless you all as you continue on your journey with your PWP. If you have any tips to share with this PD newbie, they would be much appreciated. |
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It's always hard to say "welcome" to someone who comes here -- it's not exactly a cheery thing to need to learn about and talk about PD. But still, welcome. This forum was a lifesaver for me when I was taking care of my late husband, who had PD for many years. He was 14 years my senior, and my retirement came early and was limited by his condition. Still, we did what we could, little though that might have been. I'm sure you are sad and scared -- but please don't feel guilty or selfish about reaching out here. The whole point of spaces like this is to give strength and support to you so that you can carry out this difficult role. Seeking help and expressing your needs (and meeting them!) is crucial to making sure that your PWP (person with Parkinson's) has as strong and healthy a caregiver as possible. You'll find good information and caring voices here. Take your time, take it slowly. You don't have to do everything at once. Two early steps that many advise: Find a Movement Disorders Specialst -- a neurologist with specific expertise in managing PD. then Find an Elder Law Attorney and put in place the financial and legal arrangements you need before you make any important decisions in these two key areas. Then, breathe. And come back. You are not alone in this. VV |
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What VioletV said is SO RIGHT. This is a group that no one wants to join but yet we must accept what fate has dealt us. We must be brave. I remember 10 yrs ago when I found out the news about DH having PD. I was in total shock and, then, scared out of my mind. He just seems so healthy otherwise. My mom had been a nurse and she had always told me that PD was the one thing she SO dreaded my dad getting. Well my dad never did so she was lucky to not have to become a caregiver for him but one of her good friends was suffering thru taking care of her husband and my mom was always there for her. She was always worried about her. Well, little did I know that I would be the one dealing with PD in my senior years. She told me how hard it was caring for a PD person. You have to take a deep breath and relax because this will be a LONG road and you have to take it one day at a time. My husband has never had a bad fall, never used a walker, but he coughs alot while eating and he drools too. He has trouble speaking, and many other things. Starting to look run down at his age of 70. (I am 65 soon). Sleeping is odd for every Parkinson’s patient. He goes to bed very early and gets up very early and sleeps many times during the day. I sleep in a different bedroom now so that I can actually get some sleep. To plan things for YOU you must be proactive and get out of the house regularly. It clears the mind. Trying to do anything social is so hard for him. He gets so filled with anxiety and drives me crazy asking a thousand questions about the gathering. It’s to the point where we do so much less than we used to. I just can’t deal with all the anxiety. I find I have to plan things kind of secretly for myself with friends just to have a social outlet for ME. I have to get out or I go crazy. At holidays, his anxiety goes thru the roof. During Covid I was so relieved we didn’t have to go see relatives. We were just about to start going on nice vacations (the kind u wait all your life to take) and LIVING our retirement when this happened. He cannot travel. I wish now that we had gotten a few more trips in after the diagnosis; before so many health problems start to pop up. Wish I had some great advice but I don’t…we all just have to deal with it as well as we’re able to. Some days I feel very down about the hand that has been dealt and other days I am okay. There will be so many ups and downs. I found a local support group and made some good friends before it all went away due to Covid. Family doesn’t really fully understand how difficult it is and we don’t have kids. Is there a hospital near you that can recommend a support group? Welcome….we will be going thru this with you. |
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Thank you so much for your kindness and support VioletV and DtD. Violet, You have my very deepest sympathy in the loss of your husband. I am sure he was grateful for your love and support during the years he suffered from PD. Like you, my husband is considerably older than me. When we were younger, I used to wonder how our age difference would impact our relationship as we grew older. I think I have my answer now. I appreciate your suggestions. I’ve been reading about the importance of a Movement Disorder Specialist. While DH likes his neurologist, I don't believe she is a MDS and I don’t know if he will switch at this point. DtD, like you said, I believe I’ve been in total shock and disbelief the last few weeks and needed time to adjust. Oddly, I feel quite a bit better this week. My husband also has a lot of social anxiety, mainly due to the coughing and choking. He didn’t want to go to the house of some new friends recently because then he was afraid we would have to invite them back. I am sorry that you weren’t able to travel like you hoped. I totally understand the disappointment you must feel as I feel the same way. I think there is a local support group and I probably will check it out in the future. Thank you both for your comments and suggestions! |
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Hello PD Newbie Take the advice of ViotletV and others on this forum. You will find others who are going through the same thing as you. Hope you can feel the big hug that is coming around you right now. (( )) |
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| Thank you Poollady. I appreciate the advice and the hugs. Hugs back to all of you! |
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Hello PDNewbie- I am so glad VioletV, Poollady and DaytoDay have been here for you as they have been for me. I understand that aging together looks very different-my husband is 13 years older than me. VioletV helping me understand about anticipatory grief felt incredibly comforting to me. Suddenly I felt permitted to grieve the loss of the future I had envisioned and planned, allowed to feel the emotion that came to me uninvited without guilt and the understanding of someone who understood my shock and bitter sadness watching hopes for a blossoming future disappear amongst increasing PD symptoms and decreasing choices. I too wish we had been able to travel a bit but it is difficult to leave home as he needs to be close to a bathroom all the time. I understand what you are going through with having friends over or trying to go out. It seems to cause anxiety for him and I find that I am having trouble with it too. Rather than do what I am out to do, I have to find a bathroom, wait for him, hope he does not pass out in the bathroom, then someone else needs to use it but he is still in there, or it is in use and he has to wait, I hope he can wait…. On and on it goes. I find it very challenging to remain calm. Hearing how others handle issues as gracefully as possible is a great help. Sorry to ‘go on’ but it is such a release knowing you all understand. Thanks and I’ll be checking back soon to learn and offer my support. NoMatterWhat |
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NoMatterWhat, Anticipatory Grief is the perfect term to describe my feelings right now. I am extremely emotional, with many silent tears as I observe the changes in DH as he slowly declines in health. I feel like I am already in mourning even though DH is still beside me. NMW, It appears that we have much in common, with our older husbands with bathroom issues. My husband knows the location of the bathroom in every grocery store and big box store in our area. He has much anxiety about being able to find a bathroom when he needs one and worries about this every time we leave the house. He doesn’t even like to go to church on Sundays anymore — partially because of the pandemic, but also because he feels embarrassed running to the bathroom halfway through Mass. He now insists that we sit as far back as possible, just in case. Thank you for your support. You are all so kind. Know that I am here with you and wishing you all the best. PDNewbie |
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PDNewbie- I have to correct myself to clarify that the post under my ‘Just Reaching Out’ heading about ‘anticipatory grief’ was shared by JuniperSage, not VioletV. JuniperSage shared her very personal feelings about it which seem to mirror my own and I needed to correct myself to honor her courage in sharing her personal feelings. I hear her words in my mind as I struggle to change my expectations and catch myself before responding to him saying or doing things that are out of character for him. We used to be able to finish each other’s sentences. Now, I am watching him leave me in painfully slow motion. I am trying to focus on all that we still have together. I can hold him close but I cannot hold his mind and attention as it is taken farther away by PD. The support in this forum is irreplaceable and I just had to put the record straight. Thanks, JuniperSage. NMW |
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I feel the same way. I lost the wonderful man I married in (way back in 1963) about 5 years ago. Sometimes it seems like I'm just living with a live body, but not the strong, healthy, intelligent 'rock' I married. I try to look on the bright side. We've had a good life, raised two wonderful sons, worked our asses off building a successful business, taken many vacations over the years and have many friends, employees and business associates. But it's hard for sure to see him like he is. Thankfully because of our business it gives him something to do and look forward to doing every day. Even though it's challenging for both of us. Hopefully things will be as good as they can be for you PDNewbie and all of you who are facing the same. They (whoever "they" are) God doesn't give us more than we can handle. So hang in there love your spouse as much as you can, and accept his love in return. |
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| Thank you NMW for the clarification. I also appreciate yours and Poollady’s advice and warm thoughts. Hugs to you both and all PD caregivers. |
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PDNewbie: It really does help, doesn’t it-having all these friends who know and listen? So glad you all are there and that we are keeping tabs on each other. Hugs to all of you friends out there! NoMatterWhat |