I'm sure are some of you out there who are caring for someone who does not have dementia, but the vast majority of posts seem to relate to caring for folks with Alzheimer's or other dementia. I know there a lot of commonalities in caregiving issues, no matter the condition, but there are a lot of differences as well. I don't have any particular questions at this time, just wondering what kinds of things other caregivers of non-dementia folks have to say. For example, although my husband has Parkinson's his cognition is still very good (maybe a little more trouble multi-tasking, but he's always kind of been that way). He uses a walker and is extremely careful, so no falls to date (knock wood); he also is very diligent about exercising. We're both sad we can't do things we used to, especially travel long distance, but we're trying to figure that out. He also really misses all the work he used to do outdoors.

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I am my husband's caregiver and was my Mother's before that, however keep thinking, "If I had only done this years ago, life would have been so much easier." I keep hearing the words repeated in my head....Don't swet the small stuff!!! Oh so true and more so as we all age!! I don't know if it was how I was raised and heard my parents, but I don't need to react to EVERYTHING! Or it's how I react. Both can make matters worse and wears me out. I don't hold in feelings it's just that all that small stuff can be let go. I really learned this with dealing with Alzheimers, but could have used it years ago. What a difference. The other thing I have found has been wonderful, a gift to myself, was to get the TV wireless headphones. (The ones that cup your ears, not the ear buds) The headphones give me the feeling I am in a theater, for sound and eliminating most of the room sounds. I can really enjoy programs, including concerts at my volume, without disturbing anyone at anytime and even if we are watching the same show. I don't need to hear each rinkle of the newspaper, his trip to kitchen, etc. Yet can hear if really needed. Lastly, we make sure we go out every two days at least to do something even if it is for an ice cream or lunch, followed by a different area of town, surrounding area to see. Amazing what sights in one's own area we take for granted and never view or visit. Hope this is of help. Remember....Don't swet the small stuff and enjoy every minute of everyday!!
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Reply to Marylepete
TiredSue Sep 24, 2019
Marylepete - Can you tell us what brand of wireless headphones you bought and where you got them? I bought some for my husband and they didn't seem to work so I'd like to find something better. Thank you!
I manage care for my 100-yr old Aunt several states away. Sharp as a tack, full memory long and short-term. Healthy but not very mobile, doesn't get out much as she lives in her own home so I'm always trying to think of what would help her/please her. I recently got an offer for free print version of the Wall Street Journal which I sent to her address. My aunt called my mom to say she was worried the subscription might stop! Now she reads the WSJ 6 days a week. So glad I found something she values! Moral of story is to never underestimate, never make assumptions, never stop being creative about how to bless our LOs.
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Reply to Geaton777

I think that most of us deal with husbands that have multiple issues. The thing that sets dementia apart is that you are emotionally loosing your loved one and it can’t be reversed. I am happy that you aren’t dealing with this now. Do what you can while you can. A word of encouragement. Years ago I took a cousin who had Parkinson’s on a trip to Europe. She could have never been able to go alone. Once we got there we took a bus tour all around. It was wonderful everyone helped us and the tour guides were great. Everything was planned ahead and all we had to do was enjoy ourselves. You will need help as you go through this but as long as you both are willing you can do so much.
Blessings to you
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Reply to Eloise1943

No dementia with my dad, he’s dealing with end stage congestive heart failure and very limited mobility. He uses a rollator for every slow, fragile step. Also has frequent bladder and bowel issues.
It’s wonderful that your husband continues to exercise! Encourage him in that all you can as it will be huge in keeping that mobility going as long as possible
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Reply to Daughterof1930

My brother has a probable early Lewy's Body Dementia by his symptoms alone and by an MRI with some white matter changes. He is 85. He also has a benign brain tumor, likely there for a period of a decade or more, affecting his balance. Something like a scheroma. I am not heading to the files to look up again. It presses on his medulla, ruining balance and his gait, though he has yet to fall looks a bit "drunken" (I am knocking wood along with you as he will not use a walker). Recently a woman wrote about her husbands Frontal Temporal Dementia. His periods of apparently seeming well juxtaposed with rage. Many have people they love with vascular dementia. And we learn as we go what some of the symptoms are. The more you read on the forum the more you will become informed by so many on so many cases. We are learning how different countries serve (or do not) the needs of those suffering various forms of change through the aging process. Recently I read an article about the differences in hallucinations from Parkinsonian and Lewy's and one can begin to see how we are on the cusp of beginning to learn. Before Robin Williams and Ted Turner I honestly never heard of Lewy's dementia. I wish there was so much more support out there. Where are the "Villages" they promised us, where we could share care and provide together for one another in age. I think with our aging populace that may comes as well.
So much to learn out there. I am quite addicted to this forum and all I have learned here has helped me enormously. Sometimes I also think, since I am not doing hands on in home care giving that I am steeping myself too much in the subject of aging, my own, my partner's, my brothers, our friends. That I should spend more of the time back in the garden, sewing and reading and museums. I am new to it here and here only since February, not willing to give it up yet, or even cut down I guess; it has been an enormous support to teacher for me. I am really enjoying seeing the responses from caregivers here, who have always been so helpful with answers. I know more about them by what they are doing.
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Reply to AlvaDeer
amitebird Sep 24, 2019
I have had the same worries that I am steeping myself in aging issues since my Mom's start of decline also. I have been a member of Aging Care for 3-4 years now. Decided to read over the topics each day and if they didn't apply to me and my situation to not read it - just the ones that apply to my situation. Sadly those situatioins keep growing, but I could not make it without the AC website now.
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We too are saddened by what we can’t do, but just enough to alter our lifestyle to enable us to do more. I am 61 and now the full time caregiver for my 78 yr old husband of 38 years. We have done so many different things in our lives that another adjustment is not a big deal. He is 98% blind and has mobility issues. I am a retired teacher so Its not in my personality to coddle him or enable him. For him to remain out of the nursing home, he MUST be able to get out of bed and get dressed on his own, he MUST take his meds everyday without prompting (I put them out for him in the morning...he has all day to get them down), He MUST be able to get up in the middle of the night and manuever on his own to the bathroom or he will have to wear Depends at night (his choice). He MUST be able to feed himself. I have to clean him up after a bowel movement because his hands dont work good and neither one of us want that mess to deal with. He can’t make coffee or use the microwave because he cant see the buttons or controls. I even have to set his tv channels for him...BUT...what he can do, he does for himself. His job is to feed the wild birds and our ducks in the evenings, I take care of the watering. Because he cant go down into the yard area, we built a big deck and have his bird feeders hanging from the trees, around the edge. He holds on to the railing and can feed his birds. We also continue to cruise every three months as long as he keeps up his responsibilities. Lol...I’m so mean...I wish I could post pictures if you want to share ideas about getting him back outside and keeping the life you both love, Im here and on facebook.
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Reply to burlebaby
kbaratelli Sep 27, 2019
You are such an inspiration! Bravo to you and your hubby!
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My husband has multiple health issues but no dementia and I am his only caregiver. We previously cared for my Mom and his parents, all of whom had dementia or brain issues, so this is very different. He has the desire to go places and do things but just can't, physically, and it frustrates him. I can't leave him alone (fall risk, among other things) so we try to make the most of any of our "outings" - which pretty much consist of doctor's appointments and grocery pick-up. By the way, thank goodness for Walmart and other places that have that available now - order online and they load up your car with the groceries! A life saver for us. We have friends who will stop by to visit every few weeks, so that helps, but we just try to enjoy what we can when we can. Yesterday, he felt well enough to go to a restaurant for lunch after his doctor appointment so it was a good day! Best wishes to you
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Reply to TiredSue

"We're both sad we can't do things we used to, especially travel long distance, but we're trying to figure that out." Day trips? Extended shorter trips? Find any activity outside the home that might interest both (more for him, so long as you can tolerate whatever it is!)

"He also really misses all the work he used to do outdoors." Probably involves a lot of yard work, but if he likes growing things, can you set up any kind of indoor garden? Herbs? Plants? I get satisfaction being able to start/grow/maintain plants. The current house I am in has a "sun room", which I use for plants, including a place to start my tomatoes and peppers. It is also a safe place, the cats can't get into the dirt or chew the plants!

Perhaps also, for at home, find small crafts, etc that he or both of you can work on together. Visit pet shelters, provided neither of you are allergic, to give some love/attention to those waiting for a home - cats might be easier, less chance for a dog to jump/knock you over, but all these poor animals generally welcome free attention!

While it isn't a lot, take some comfort in the fact that he DOESN'T have any real cognitive issues! Sad to have to curtail once loved activities, but dementia adds a whole new dimension to care-giving, which you have seen when reading posts here!
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Reply to disgustedtoo

I have a neurological disorder ( I don’t produce aerobic energy so it affects every system) and basically am housebound . I got sick in 1988 and have been bedridden to housebound, to some what limited and back again but never well since. It stinks to be honest. Now at 66 yes, medical POA to a narcissist mother with vascular dementia lol. (🙄🙄🙄🙄🙄)
the only thing I can tell you is try to maintain some kind of enjoyable hobby. I’ve spiraled down physically but keep replacing what I can’t do any longer ( gardening, photography, refinishing furniture ) with things I can do, recently started crocheting and freeform crochet. Imo to keep your sanity you need to do something “ useful” and enjoyable
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Reply to Jannner
cherokeegrrl54 Sep 24, 2019
Thats why i quilt.....but most carry on my beloved granmas tradition...💖
My father does not have dementia at this time, for which I am very grateful. Though disabled from an accident three years ago, he makes jokes, is polite, is interested in things, has answers for 'Jeopardy' and is basically the same person now at 84 that he has always been. I feel thankful for this every day.
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Reply to SnoopyLove

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