For those who care for someone with Parkinson's disease
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Topic It Sure Gets Lonely Go to previous topic Go to next topic Go to higher level

By Trusting On 2015.08.03 12:23
I don't know how many years ago I joined this forum. My husband was doing pretty good back then. He was still driving, and pretty independent. Things are now changing for us: He hasn't driven a car for over a year, can barely dress his self, and dementia is getting worse.
I've been told by his doctor that I can still run short errands but not to leave him all day anymore.
It's against my nature to just sit home all day. I'm usually pretty active so this is quite an adjustment. I must admit I'm getting bored and know this leg of our journey is just beginning. If it weren't for my computer and internet I feel I'd go crazy. How are some of you other caregivers coping? What do you do to fill your days? I do a lot of crafting and will continue to make blankets for children's hospitals but I can only do so much crafting? Suggestions?

By umajane On 2015.08.03 12:36
Hi Trusting,
Your post could have been my post. I am in almost the same situation.
Ok here is what I do to survive my boredom as I too am a very active and busy person.
I have a caregiver about 2X a week for 3-4 hours..At that time I can meet friends or family for lunch, go to the pool, etc etc. I have been planning dinners out about twice a month because my husband is not interested in eating in restaurants.. He is not unhappy at home.
Everyday I try to take him somewhere if only to the park with his beloved dog or shopping maybe at Costco or Whole Foods. I have a few small trips planned with family and or grand kids.. I wish we could do exciting things together but it looks like that part of our life is over..
I watch interesting programs on Netflix, and like you spend a lot of time on my computer. I bought a fitbit and try to walk when he is napping and also read a lot.
You are not alone in this Parkinson's journey... I really feel alone sometimes as I am not ready to slow down.

By jcoff012 On 2015.08.03 12:52
Since the eye doctor has not let me drive for over three months and I still can't, I see this from the other side is horrible to become just a passenger!

Even writing online is a chore, so I am, I FULLY understand how you feel not being able to do things, but being reliant is also a terrible feeling. I have much more compassion for PWP! Our case is reversed now..*I* don't want to go out because I have to wear dark glasses everywhere, my eyes get tired easily so even going to a movie is tough...

So, I guess what I am saying is that for me, seeing this from the side of someone who was always "doing" something to now being the one who cannot, has been a life experience...I see the chagrin in Carl's face as he tries to suggest things we might do, and to me, it is so sad to know *I* am eating up time he has left by being the patient!

Illness is a two way street, but for me there is hope..for him there is only the inevitable.

Try to hang in there. You are both excellent caregivers and your posts are loving. Just take time to take care of are worth it! Love, Jane

By LC On 2015.08.03 14:36
i understand how you feel. My husband no longer drives, dresses himself, or baths himself. I have to do all these things for him. He is 67 and I am 62. I was fortunate enough to be able to retire and take care of him. His decline was rapid and in the mist of that his mom passed away from pancreatic cancer. I have finally resigned myself to the fact that our lives will never be the same. I am fortunate that we have access to an adult day health care center close by. At this time we have to pay the full cost but it is worth every cent. It helps him to engage with other people and I have time to myself to unwind. You may want to look into some form of respite for your sake. Caregivers need to take care of themselves in order to take care of their loved one.

By carman96 On 2015.08.05 08:08
Trusting, my husband has Dementia, has not driven in several years, needs help with dressing, bathing, etc. I have not been able to leave him alone for a few years now.
Be glad that you have the time to be bored. Someday you might be too busy. The loneliness and isolation is hard also.
When my husband naps, I do chores or try to catch up on paying bills or making phone calls. When he's awake , he needs constant supervision.
Make the most of the time you have.

By walkingwounded On 2015.08.11 20:19
I've learned to exercise as much as possible at home, so I don't go downhill with my parents. If I'm not researching this disease online, I'm watching documentaries on Netflix, reading the news, and even took up a video game. I also try to check out something new every now and then, just to make life more interesting.

It's easy to be so focused on the ones we care for, that we forget to take care of ourselves. It's ok to take a break once in a while. Have a friend or family member come by, and train them with assistive devices and the nuances of your husband, so that you feel ok leaving him with them when you do get out. I'm lucky that my dad needed a caretaker 1st, so mom had time to teach me to care for him before she was diagnosed, and also have time for some dry runs. If there's no one else that can substitute, adult day care is the only other option in my area.

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