How People Can Help

Cardenas1816

Often friends will ask how they can help. For the ones that my husband doesn’t know well I let them know just checking in on me helps. And for the ones he does know the best help is taking him out of the house (for a walk or lunch) on a regular basis. It gives me time I can count on to focus on myself or errands, and it gives him a feeling of real friendship with them.

What have you found that helps?

annie51

I have friends that would occasionally get us some takeout so I didn’t have to cook. Or offer to do some yard work, trimming, things like that. Or even to do a little grocery shopping. Every little bit helped. And, yes, just someone thoughtful enough to check on me was a help to my mental state.

charley0419

it’s really on us as that’s short lived

tonyac2

The helpers are few and far between. That’s really sad when I think about it. We have a dear friend who will come be with my DH if I ask and she’s available. Another friend of ours will visit for about an hour, three or four times a month. Today, a friend from the gym came and helped me take my Christmas lights down from the house. My niece came over today and I asked her to take my DH for a ride in the van so I could go walk our dog at the dam. I loved the feeling of not having to rush. My DH is late 6 heading into 7, so it’s intimidating to most people to spend time with him, especially alone. I think it scares them.

Biggles

I think if you have a friend or friends that will spend time with your LO you are very lucky indeed. We moved nearly 4 years ago to be near our daughter and her family, we have had to forge our way in a new environment and find new friends. Which I am very happy to say we have done but friends from the past have not been seen. Our daughter is very busy with three teenage boys, a husband and a very demanding career, very attentive with verbal care but no time to help. We are lucky that our medical system, once you weigh through the red tape is wonderful and I now have Government subsidised gardeners and a cleaner once a fortnight. I have now found a Carer that my DH relates very well to, also subsidised and we have access to other medical benefits. This has taken an enormous amount of effort, determination, tears and faith to set up. But helpful friends and relations are conspicuous by their absence. I have found that no one really wants to be bothered on a one to one basis with your ‘problem’ the Cavalry’s NOT Coming so it’s up to yourself. We have a puppy, a very caring social dog park and I am now a committee member with Sailability full of caring special-needs people who love the water, again very social and understanding.

I agree with @tonyac2 I think this disease is intimidating and it scares them.

Bobo59

i find it sad that the friends who were in our lives almost daily have disappeared. But not all. There are a few who would take my DH out for ice cream who still arrive at our home, ice cream in hand, and visit for an hour even though they have little conversation wiith my DH. I think socialization is so important, even at these late stages. I see my DH try to perform at a level he doesn't when it is just me. Also, I have noticed the sadness in our friends when they see, first hand, the decline in my DH. I am quick to remind them that I am adjusting to these changes day by day. They can't imagine because its been 6 months. The analogy I was told so long ago was this: We, as caregivers, are like frogs in a pot of water on the stove. our situation is becoming more dire as the pot grows hotter, but we adapt., we can deal with the heat. At some point, we can't handle it any longer and we have to escape. I find this so true. It would be unbearable to anyone thrown into our situation at this point in our journey. They, the frog, would immediately jump or perish. But we have been slowly simmering and adjusting to the heat, barely noticing how hot the waters are getting until we can't bare it any longer.