Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
My partner is my best friend. We talk all the time and its not always what I need, but its all the conversation I get. Rest of the time is sitting in front of a computer.. or talking to my kids. I would give anything to pick up the phone and call a friend or something.
My sister used to be my best friend but she passed away in 2011. Anyhow my partner has ALS and most people won't even know what that is but his has affected his speech and swallowing.
Recently he has developed this horrible fatigue. He can't hardly get around. Its so tough. He's young, handsome and as of the last week or so.. can't move around more than an hour. He won't talk to me, cause its getting too hard and he's just too tired. I know things will only get worse.. usually caring for him is something I enjoy. This week has been so hard. I can't do anything to help!!
I feel so lonely.... I keep thinking its not going to get any better only worse. I question my own strength! On top of everything, he's very stubborn. So he pushes himself when he shouldn't then he's in bed for two days! I feel like there's something I could do to make him feel better. Or go back in time two weeks...
My sister used to be my best friend but she passed away in 2011. Anyhow my partner has ALS and most people won't even know what that is but his has affected his speech and swallowing.
Recently he has developed this horrible fatigue. He can't hardly get around. Its so tough. He's young, handsome and as of the last week or so.. can't move around more than an hour. He won't talk to me, cause its getting too hard and he's just too tired. I know things will only get worse.. usually caring for him is something I enjoy. This week has been so hard. I can't do anything to help!!
I feel so lonely.... I keep thinking its not going to get any better only worse. I question my own strength! On top of everything, he's very stubborn. So he pushes himself when he shouldn't then he's in bed for two days! I feel like there's something I could do to make him feel better. Or go back in time two weeks...
I do know what ALS is. It is called Amyotrophic Lateral Sclerosis & is commonly known as Lou Gehrig's Disease. It is a neuro/muscular/motor sabotuer. And I understand there is not yet a cure. My hero, Physicist Stephen Hawking suffers from ALS.
As for your partner's stubbornness, he'll have to learn for himself in his own time. He must be ready in his heart & spirit to accept the limitations that come with this disease. And, you, the Angel in his life, must only do what you can until he allows you to do more.
Please, seek out Respite Time, it's time away from the stress. It gives you, the Caregiver, a chance to rest & recharge your batteries!
Hugs from the Heart, MelodyJane
I would go with what Melody Jane said. Your partner needs time to adjust to his diagnosis as do you. When my son had his brain injury, all I could focus on was my loss and the future I faced as his carer. One day someone said about what my son had lost, his dreams, his future... it changed my perspective. I found a deep acceptance and with that came peace. We take one day at a time and life is different but good.
I hope you can find some support locally. In the uk we have carers groups. Perhaps there is one in your area or you could advertise locally for people in similar situations to meet up. Big hugs xx
Hugs & Love, MelodyJane
perhaps you could find something very useful for him to do that takes minimal effort? even if its not as useful as youd like it to be, you could tell him its really important to you and only he can do it... if youre convincing enough, it could be enough to put a smile on his face as he does it
also, i suggest finding groups or clubs or leagues to join (with him or on your own, and, in real life, not online, if you can) where you'll find new friends and people to talk to on a regular basis... it helps... lots
even finding new friends online can be very helpful, but finding them in real life will be a lot more helpful
*hugs* to you... i hope ive been of some help