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Sep 16, 2016 · Caring for someone with dementia / Alzheimer's in Caregivers: Dementia

I really get what that’s like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He’s 74 and otherwise very healthy. For awhile I thought I’d just gotten very boring and bad at communication since we could discuss something one day and the next, he didn’t even remember we’d discussed it. Then I had one of those stomach-sinking “Aha’s” – that’s a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV — and it’s the same frustration every day — apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn’t get it — the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it’s just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I’m pretty sure that’s one of those conversations he won’t remember having. And despite the fact that he doesn’t want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He’s still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I’m so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It’s discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease–but I am sure looking forward to the kind of progress with dementia treatment that we’ve seen with cancer in the past few years! Glad there’s a place to share about it with people who don’t pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!

Sep 16, 2016 · Caring for someone with dementia / Alzheimer's in Caregivers: Dementia

A BIG Welcome! The lights and the doggie poop bags are both great ideas that I had not thought of, so thanks for adding value for the rest of us before you even know us! I’m implementing both today! Hope I can return the ideas to you as we participate in this group.

Sep 10, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

My experience with my Mom is that she vehemently asserts that she is NOT depressed – in fact that she is perfectly content to be left on her own, not needing “anyone to entertain me”. She has always been rather less social than many so it’s not as big a deal with her as with some. Nonetheless, when we have company or when we take her out – to a concert or park or zoo, etc. – she smiles, initiates some small and routine interactions, obviously enjoys watching and engaging with small children, etc. But mostly, she seems to just want to be included on the periphery. I think observing and smiling and enjoying is her current form of socializing – very little of it verbal. So I think you’re right when you say this is part of the disease, and I think you’re on track with some of the reasons, too. We find it more useful to figure out how to let her enjoy the people around her without requiring her to be the focus of attention. Many times people try too hard to engage her when a simple handshake, eye contact, and exchange of names is sufficient. After that, they’re part of her tribe, even if she can’t remember their name, and as long as she is surrounded by members of her tribe, she feels safe and happy. To give her an antidepressant for any of this would be a copout at least, and malpractice at most. Just wish we could provide her with more frequent exposure. But going out is still quite a logistical challenge, and frankly, my husband and I are not all that social either. But my key point is that reduction of social behaviors is not equal to depression necessarily. Even without dementia, I find myself cherishing quiet times alone more and more as I age. And if anyone tries to give me an antidepressant, they will not find me compliant.

Aug 31, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

I know your granddaughter will appreciate how thoughtfully you have chosen her gifts, particularly with all the other things you have going on.
As for your book, you might want to check out It’s sort of like an online bulletin board where people can post what skills they offer and what they need. If you post a request for someone who could turn your dictation into print, they will come back to you with an estimate of what it would cost to do that. You’ll get 5 responses and can choose one or none of them.
Good luck! Even Mark Twain remarked that if he’d known how much trouble it was to write a book, he might never have done it. So keep pushing through to accomplish that worthy and demanding goal.

Aug 31, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

What a resourceful and courageous woman you are to focus on using the resources available to you (the Internet, for example), even when so many of the resources you have relied on are no longer available! I salute you, Nancy. Your strength is inspiring.
Of course you are tired – especially mentally and emotionally. It’s not so much age as it is the number of challenges that have been packed into those years, particularly the most recent ones. Are there any local branches of government or nonprofit or community organizations that focus on helping out with things like transportation? Department of Aging has sometimes come through; sometimes not. When I was in Missouri, there was a van that would take people to and from the senior center for events, which enabled people to get out and socialize a little. That was also available for trips to doctors.
It would make sense for communities to do some advance planning for keeping people active as we age, but most communities have not addressed this adequately. Maybe making your needs known will help make solutions available to others going forward.
If you are not already taking full advantage of the helping hearts of friends and neighbors, please reconsider. All of us are afraid of inconveniencing others, yet many people want to help and don’t know what to offer.
Your situation is like a 15 on a scale of 10 in terms of stress. I can’t even imagine the strength it has taken to get to where you are today. Do use this forum to talk. Sometimes we have ideas for resources; other times we just are there for each other. Either way, there are people here who truly care that your life is hard right now and will do what we can to bring some positives into it.

Aug 29, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Beth, that is such a lovely and generous offer. Thank you! My sister has been stabilized and leading an uninterrupted life with a bipolar diagnosis for a couple of decades now. I will ask her if she would like to receive your email – I try to be careful to not look like I’m meddling or trying to fix something that is no longer broken. But I think it would be great for her to have someone to talk with who has experienced that vicious disease. I’m so glad you got yourself out of its clutches. When she first began to experience it, Lithium was the only thing available and its side effects were pretty awful for her. Sometimes I think the only thing that kept her in our lives was that our bipolar Dad took his own life when we were small and she had sworn never to do that no matter how bad it got. Lucky us that she made that promise and we still have such a delightful woman in our family!

Thanks again for your loving offer.


Aug 29, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Beth, how my heart and my prayers go out to you. What a lot to experience in such a short time! Your own grieving for all you are losing or afraid of losing also needs to be experienced and honored. Sounds like getting him on anti-depressants is a good start, though you may have to hand them to him with a glass of juice and watch him swallow in the beginning – and that may irritate him, but CAN be done with grace and love, both of which you appear to have lots of. Two of my sisters, one of whom is bipolar, have struggled with depression and my takeaway from that is that I can’t fix it. But here’s how one of them described it. “It’s like you’re down in a deep hole and can’t see any way out. But there are people at the top of the hole, shouting down their love and encouragement. You can hear it but you can’t respond to it. Even so, it’s so important to survival that they are up there trying to reach out to you and they’re not giving up on you.” It was a huge “aha” for me, as I’d felt like I was not only wasting my time, but more importantly, I thought I had become more of an irritant than an encouragement. So I guess my thought is to just keep loving him like you’re doing, and don’t be afraid to go to him on that couch in the dark basement and gently rub his arm or shake him awake and gently say how much you need his company on a quick walk. Maybe he’ll do something for you that he’s not willing yet to do for himself. There appears to be a good bit of research that shows that if you change the physiology – I.e., get him off the couch for even a few minutes a day – that in itself begins to change the emotional processing. It’s actually not possible to continue feeling depressed if you are smiling, standing straight up, and walking with a posture of confidence — even if you’re faking. It still changes how the brain responds. Hang in there and find all the emotional support you can, including this group. Your situation is one of those that makes me aware of how very cruel the world can be. May you continue to have the heart and mind to keep fighting to have that loving life you dreamed of every single day, one day at a time. Blessings, love and prayers!

Aug 28, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Rozalia, I agree this is a good group for you. As caregivers we need lots of sources of encouragement and this is one. I’m watching the person who was my Mom disappear just as you are with your husband. It’s not pleasant, very challenging, and sometimes the hopelessness of it all gets overwhelming. When that happens, we need each other’s support so much!