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Posts posted by HostTracy

  1. Alan I feel that it is very normal to carry sad feelings and you miss things you enjoyed before and either enjoy differently or possibly can't enjoy now. I feel like it is a healthy part of grief. Mindfulness can be very positive going forward. 🙂. Happy Strokeaversary! 🤗

  2. Again I feel the same as Heather. Communication can be a huge bump in the road after stroke for both survivor and caretaker. With the suggestions of the Dr.'s who are very familiar with stroke it's possible to find therapists and Psychiatrists who have experience with stroke and it's sometimes very confusing after effects. 🙂

  3. I agree with all of you. A good Psychiatrist will give you tools and encouragement to face what's in front of you. Unbiased ear, unbiased information, unbiased acknowledgement, unbiased tools to seek solutions and help one deal with their "things". In your case I feel it very important to do some therapy together maybe even first before individual therapy. The human mind reacts in so many unusual ways when a person feels fear, feels out of control, feels helpless, feels unsure. The fear of not being enough anymore, not loved, not needed, defective...its so strong, painful, so scary. I know I've been there. I accused or was paranoid of my ex leaving me, not loving me, cheating on me, not wanting to be with me anymore. It gave me so much anxiety I felt as though my head would explode, my heart would explode. I could not control my thoughts and fears. They were like nightmares I lived in. I said things that were hurtful, I was not nice at times, and exactly like Kelli said I couldn't get out of my head long enough or well enough to think honestly and clearly or even with gratitude. Today I see all that I missed and was blind to. I see how it hurt my loved ones. I am wholeheartedly grateful for all of them. Before, I was physically damaged...my brain could not work like a brain should work, understand. I could not feel or control my emotions like those around me could. I did not make it easy to love me and take care of me. Something I know is so just wrong...regardless I was not in control. Reassurance was vital. I needed it like I needed water. I needed it over and over and over because the devastating crazy fears came back over and over and over. Again...it was so out of my control. My Neurologist said I should seek therapy but they never say you both need to seek therapy. You both are victims! So how do you navigate through this storm! Ask for help...for you both, for your relationship, for your marriage, for your love, for how to survive this threat. Your is both of you. Ask yourself "Do I want to lose what I have made, shared, become because I am tired and don't know what to do? or do I want to find what may help myself and my spouse to feel safe, reassured and hopeful?". It's unfair, the weight is uneven, you have to carry the other right now. It's not easy... It will affect you...you will not escape the stroke's reach...your wife is in it's grips. I don't think it will feel fair to you at all. I know it will not feel fair to her. There is someone who can help you and your wife. It may be up to you to seek that out. I'm so sorry these choices all seem to fall on you right now. We carry those we love when they can't walk alone and they carry us when we can't walk alone. Is your (you and your wife) love worth it? Remember your love before the stroke before you answer that question. I pray that like so many I know personally, that in time your wife will allow the love given to her, that she will know how grateful she is and that she can give her love back and not be terrified. Sending so many prayers for you both. 

  4. Sitting here rereading all the posts and I feel such a loss for words. I am so sorry Jim. You have been doing so much to help your wife, to feed her spirit, to show and give her love. Your wife is so lucky to have you in her life. I'm thinking of you and am sending prayers and a kind ear your way. I'm so sorry for your pain and frustration. I think I understand why you feel guilt but I want to say that I don't feel for a moment you should. You really can't "make" someone be or do or have motivation and I don't think it is for lack of trying everything you can. I still think you guys could have more answers and assistance but Heather is so right. You can't help someone who is unwilling to help themselves whether it may be depression, stroke defecits and changes. I can only imagine how so frustrating your situation is. I hope you you take a chance and really find ways to help you to navigate through the process and help to deal with how this affects you emotionally and physically. Be good to yourself, take care of yourself and please know I'm here...so many are here to give our support. Sometimes just listening can help. I know that's what I need sometimes. 😒 Sending you best wishes. 

  5. Absolutely agree Becky 🙂! Jim we hear you. Happiness is a journey that starts with yourself. Neuropsychogical testing would be very informative and helpful to your wife and for you. The unknown is how much of her behavior is she in control of; what treatments, therapies, medications, etc. could help; can there be improvement and are either of you experiencing depression and need medication/therapy. I also very much agree that you need to seek mental health support or rather more support in general. Anyone in your shoes would more than likely need the same thing...your wife as well. 

  6. Hi Jim my name is Tracy. I am very sorry you and your wife find yourselves here. I can hear how much you love your wife and I can hear how frustrated you are and can sense your pain. I, in every way, admire every caretaker. Caretaker to me is one of the toughest positions to be in. It does sound as though your wife may be experiencing some depression and definitely at the very least lack of motivation. These things can be caused by stroke itself. Stroke can be the cause of so many emotional, behavioral and physical things (including being fearful of losing her husband) for the survivor.  For you, I can see how difficult and sometimes maybe even hopeless you feel. I suggest that you speak with your wife's medical team to ensure your wife is getting all the help she needs and that her needs are met at this point. I also feel like you, the caretaker, need to spend time and effort on yourself. Plan this time, make it a priority, make you a priority, rest, be good to yourself, seek therapy if you need...caretaker burnout is so real. You need to recharge. It will help you to have a clear mind, have energy, to have patience, to seek new or different help for you and your wife, to have more stamina for your very tough position. Taking care of you will help you to be able to be a caretaker for your wife. You deserve this self care. I wish I could just give you "the" answer. I feel that with more support for your wife's issues through her medical team (Neurologist, PCP, Therapists, or any other member) finding things that may help would/could be so good for both of you. Hang in there, take care of you, get help for you (I can't think of anyone who deserves this more than a caretaker and who he/she takes care of). ☮️❤️

  7. Sue I truly feel you are very right my friend. Some call it karma, circle of life, love...no matter it comes back to you. Beautiful souls choose to see through the rough stuff not to ignore it but because they know the rewards once past. You dear Sue are a beautiful soul. 


    Paul, I don't feel what you say is incoherent at all. Sometimes life circumstances prepare us for what is likely ahead. Sometimes we just don't end up on the "likely" path. Not too much prepares us for those instances. It is very hard to shake what has been engrained in you your whole life. You just know something doesn't feel right. You learn how to navigate on rough waters. You learn that this world is not black and white. The gray is /has always been a force. May your path lead you to a positive light. You do serve others when you allow others to serve you when you need this. I don't see it as a moral failing but a righteous path. As hard as it is and I know it's hard, you can define you. (((HUGS))) 

  8. Sue your comment brings my stepmom to mind. Daddy finally was taken off of life support today. It's been a hard day for everyone I know in my Dad's family and other friends and acquaintances. My stepmom has challenges herself mentally and physically. She has been a caregiver for so very long. First for her mom...who passed last year at 97. She moved in with her mom 7 years before her passing. My dad was not sick then and he encouraged Janice to go to her mom. Janice came to her and my dad's house maybe once or twice a week. They spoke by phone often. Her brother lives in Oklahoma so Janice was essentially her moms only caretaker. She did so with love and happiness. She never has been able to process her mom's passing because she finally moved back to her house with my dad and almost right away he was diagnosed with lung cancer. Though I lived with them I wasn't my dad's direct caretaker...he wanted Janice to fulfill that and with an open heart of course she did. We have had many talks, disagreements, understandings...i know she felt very alone. She on many occasions said "I do it all.". It wore on her like a heavy wet blanket. My sister and I both have tried to be encouraging during this really hard time. It is time that she focus on and take care of herself now. To feel OK that someone takes care of her. I have seen the long, hard, lonely, debilitating and hollow price. For her it has been a huge price. I try and tell her how much I love her and thank you for all she does. My love and prayers are with her. 


    I also think of my daughter who was my caregiver after my stroke 4 years ago. She had already gone through so much and she was thriving. Full time college and full time job and on July 5th 2015 full time caretaker (she was 19). I am so heart broken how much doing so took from her and I wish so much that she had never found her life placed in those circumstances. How inconvenient is a stroke! Without her I don't know if I would be here today. She sacrificed everything to take care of me. Her mental health took a big blow. After time, she no longer could be my caretaker...or work or function at her prior stability. She quit school. She moved out and got into a very unhealthy relationship. Support for her was absolutely lacking. I was too ill, my ex was no support period, and I know she also felt very alone. 


    I thank God for them both. I am in awe at their selflessness at the moment. Such a heavy price. Sue you are so beautiful. Such a true blessing for others like yourself. Thank you for all you have done and all you do. 

  9. I very much understand and relate. My bilateral cerebellar stroke was 4 years ago but my PBA never quite went away. For months after the stroke I had extreme fits of flipping back and forth (crying/laughing). I couldn't control it. It was exhausting. It is extremely difficult for others around me...they easily get upset because I easily get upset and want me to stop. They don't understand when I tell them "I can't control it". I have a wonderful Psychiatrist who has worked to help me for the past 3 years. I take Nuedexta specifically for PBA as well as antidepressants and anxiolytics for my severe GAD with panic disorder. It isn't perfect...I have breakthrough moments but I am so much better than I was. It is very expensive but the manufacturer has a program to help those who need financial assistance. I can see why you may have gotten much worse in this way after a brainstem stroke (posterior circulation). These types of strokes can disrupt differently than many other kinds. The cerebellum is also a posterior circulation stroke. I wish you all the best. I think Nuedexta is the only FDA approved drug available specifically for PBA. You may need to work closely with a Psychiatrist or Medical Dr familiar with using Nuedexta. Many have no experience with it but if you find the right Dr. who is really wanting and willing to learn and be of help it can be life changing. 

  10. On 6/30/2019 at 8:06 PM, becky1 said:

    A while back, I was researching something else and read that it is not uncommon to have the hiccups just prior to having a stroke. Now, every time I get the hiccups I almost jump outta my skin! Which is silly, I know,` just the thought......Anyway, knowing me and my anxiety, I'm not sure I want to know if there is a way to tell if you're gonna have a stroke, but that info may be extremely useful to others.

    Becky my anxiety is extreme and I'm glad I don't fixate on my hiccups because I would be insane by now lol. Since my stroke (BTW 4 years ago today 😊) I get the hiccups all the time! Like every time I eat or drink something. I think of it as more an annoyance than anything. In my local stroke support group there are many of them with the same complaint. A lot of them get hiccups way more than they ever did before. Also, my step-dad gets hiccups that won't go away every so often too. He has even been to the ER with them and they give him some sort of medicine. I think told him that he has a sensitive vasovagal reflex or something I don't know. I've heard the same thing though. I can imagine how it affects you.