I am a very sad caregiver who has posted on this site before…
Hello as I noted, I have posted on this site before… my fiancé and partner of nine years has long Covid for the past four years and it has changed him totally- he is on disability and has gone from a very busy active man who fished and golfed and worked hard to sleeping on sofa good part of the time and can get winded just working in the yard for 10 minutes he was always a very physically, strong man he has lost so much weight and muscle mass. It just saddens me so.. The neurological changes are very hard for him .No fishing or golfing for over three years. it is such a life-changing illness, which unfortunately, NOBODY understands or talks about unless if they know somebody who has it . Even family member who I love just do not get it.… I also care for my 89-year-old mother, even though she lives in a senior facility she has dementia, and I have always cared for her through life and through all of her struggles. I think I just want to know does anybody else feel so incredibly empty? Sometimes I keep trying and trying to find an answer or do the right thing for my fiancé, but I realize I really cannot .excuse if this is a rambling note. Just as an FYI I love my fiancé Jeff dearly we are in this together and I love my mother dearly, but I am just so so tired thank you for listening.🦋
Karen
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Such a lovely and true verse - helps to remember this - thank you for sharing and reminding us of the “ bigger picture “🦋
You are not alone. All care givers feel this way at some point or another. It's exhausting. We all, even the sick, want our "normal' life back. We tend to forget what that is or how to live it. You are not alone in your thoughts and feelings.
Agree. One's faith helps. Brought me through dark times, with my own cancer journey. Mother Teresa's approach to the unfortunate, even despicable person, to regard them as Christ in disguise. As caregivers, we see our loved ones ungrateful.
My new mantra:
Accept, don't expect.
This site helps to know we are not alone. My heart felt Prayers to all.
I just returned early from a "vacation" at the Jersey shore with my grown children and my husband, their stepfather, who has dementia. He kept getting up at night and, even though the bedroom door was hooked, wandering through the house looking for the bathroom, and then wandering into other people's bedrooms looking for our room. He was so lost and frightened, it was heartbreaking, so we returned early, even though I won't see some of my kids again until Christmas. I am thinking and praying about the situation and am reminding myself daily that we are both still alive and still love each other dearly. We've had many wonderful years together, which many couples don't necessarily achieve. Trying to focus on that joy each day.
Welcome to the forum! Great example of counting your blessings.
Thank you for your encouraging words. Sometimes i think I'm cracking up while on a merry go round, grumpy then sad.
Take care
Karen and all of you. I can't imagine your courage and care! Our time is coming as we are aging and I hope we will be as strong and brave as you all are. Meanwhile, you may have advice for me . I am spending time with a friend's wife, whom I have only recently met, while my husband gives hers some time and a break. She has advanced Parkinson's and while I am fond of this brilliant person, I can't understand her speech or what she would enjoy and family can't seem to advise. Putting my situation in your story, do you have friends who would spend a little time with your loved one with a little coaching from you? And if you have advice for me about how to interact with my friend when I struggle to understand her, I would be grateful.
Communication can take many forms.
Body language, like a smile or a hug, might work. Or singing a familiar song. Moving to music, even if only with hands or arms, or foot tapping. Eating or drinking something together is another way to show
solidarity.
It's being together, in whatever form, that makes it meaningful and comforting and uplifting. You and she will be in my thoughts.
@hudsonlady
Cudos to you for your dedication to spending time with someone who is probably craving interaction! I am caretaker for my 94year old father in my home. Although he does not have a challenge like Parkinson’s, he does have significant hearing loss and sometimes struggles even with hearing aids. I know that with Parkinson’s it is probably more of an issue of that person having barriers to articulation. But both situations have barriers to connection and communication.
I have found that it is easier to communicate with my dad in quiet environments with fewer distracting noises. Patience and facial expressions welcoming connection and reflecting patience is important. Activities that foster connection but don’t require verbal exchange are sometimes a relief—like going for a walk (he has poor mobility so I push him in his wheelchair, or he used to drive his mobility scooter—which is more challenging and not something we do now as his eyesight with macular is becoming more diminished). He likes to garden so we visit different area nurseries and choose plants and flowers that he can enjoy. I realize that with a person suffering with Parkinson’s, needs and activities may be different.
I did google how to foster communication with someone who has Parkinson’s and it came up with the following:
Effective Communication Techniques
To facilitate better communication, consider the following strategies:
Face the Person: Ensure you are facing the individual to help them see your facial expressions and lip movements.
Choose a Quiet Environment: Minimize background noise by turning off TVs or radios to help them focus on the conversation.
Be Patient: Allow extra time for them to respond. Avoid interrupting or finishing their sentences.
Use Simple Questions: Ask yes or no questions to make it easier for them to respond.
Encourage Nonverbal Communication: Gestures, facial expressions, and writing can help convey messages when verbal communication is challenging.
Agingcare.com also has input on the subject from many people who have loved ones living with Parkinson’s. Is very interesting and I think some of the suggestions will help me with Dad!
Blessings as you continue to reach out!
Time for You to take a little vacation..You deserve some Me Time..Just do it & think later..lol