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Meet fellow Caregivers - Introduce yourself
Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?
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iI have been trying to write my book. It is a book on fishing. In our area we have a beach that flat bottom boats launch right into the surf. I was one of the first of five women to do this with their husbands in 1971. I really can't type, like I use to way back. I want to be able to talk into the mike and then give it to someone to take the words off the tape. I have the most of it out on a table in "my office" as such as it is. Everything is in here. I am just tired and I don't know what to do to get me up and at'em. I enjoy my computer and I play some games and puzzles. I read some but have age related eye degeneration.
I also read slowly some books. I have a little dog "Abbi" which I dearly love. She barks alot which gives my husband the fits...I have three son's and 1 daughter. * grand children, 6 great grandchildren one of who is 22. One of my grand daughters is getting married on October 1. For her wedding shower I found a set of two "camouflage wine glasses. She really liked them. For her wedding gift I am getting a "Amish Heart Basket with leather handels" 12x12 x6 3/4th. I will do nicely as I bought as follows... 2 each smoked oysters, smoked clams, smoked mussels, sardines, shrimp and tuna fish and colored tooth picks. I will wrap each set of two items and then wrap the whole basket. The basket she can use for many things. ..... Rambling on today. Nancy
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.
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 Thumbtack.com. 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.
Hello @rjm62 and welcome! I am sure you are scared! Fear is a very usual (and I might say from my experience) 'normal' reaction to caregiving.
I was my wife's sole caregiver for 14 years until she qualified for home hospice the last two years.
I think it was the first 'job' I ever held without any training for it, no 'employee manual', no readily available support structure, etc.
I came here because of all those reasons! Caregiving is scary and demanding and there is a lot on the line as we try our best to do our best along a path we found ourselves thrust into.
I, and others here, are open, supportive, honest, and we try and be helpful and nonjudgmental.
Ask any questions you may have --- and thank you for the smile, by the way! My wife often would ask me who was taking care of whom over the years! In many ways we did rely on each other as strange as that may sound. We caregivers need all the support we can get -- where ever we can find it!
Peace and strength
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2 ReactionsHello @shortshot80! How wonderful to have you here! I am Scott and I was my wife's primary caregiver for 14 years. I, too, lived in an isolated location and the caregiving added to that isolation. I am so happy you said 'this way I can maybe talk'! YES DO!
While every patient's cancer journey is unique and so, as a result, every caregiver's journey is also -- there are many similarities and commonalities.
I believe as individuals caregivers are immensely strong! As a group, even electronically here, we can be all the stronger!
I hope you feel free to talk and ask questions. We many not have all the answers, but if you are like me, just getting things 'off your chest' can make the journey a slight bit easier!
I send you strength and peace,
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1 ReactionThanks for you note, Before my husband got his cancer, I was taking care of my aunt. I was her caregiver, conservator to 30 years. One can get burned out caregiving. I also took care of my husbands brother who drank all the time. Tried to save his truck, but he rand a tab at the tavern and of course could not pay so lost his truck. Had a bill at Bank of America for over 6 grand. This was really "fun" to take care of. Seems like I've had someone to watch over for most of my life. I have four children. The boys and one girl. My second son's first wife died of cancer in 1998. His second wife has lung cancer. My third son has his bone marrow kicking out too many red cells and so he is on some kind of caner medicine which makes him pretty sick. He has started taking the medicine in the evening with dinner. Then he goes to bed, doesn't sleep much. I'm not supposed to worry about my family, but I'm a "mom" and I can't help it.
Over the years taking care of someone, I've held a full time job as a "off sett printer" I did that in various places, commercial shops and a couple of school districts. Took off for a couple of years then went to driving school bus. ( Most fun job I've ever had. Rambling today.
Thanks for your comments. Nancy
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2 ReactionsI am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.
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2 ReactionsHello @macbeth. Nice to electronically meet you here! I wish you well on your husband's and your journeys. It is wonderful to see you here. As you may have seen in my intro, my mother-in-law (MIL) had dementia for decades. Also my wife, in many of the years of her battle with brain cancer, had dementia-like symptoms we had to deal with.
I am NOT a medical professional at all, so my comments are simply based on our experiences.
As to the possible side effects of some of the current drugs, in our case if the physician suggested them we tried them. With every drug there are possible side effects, which seem horrid (and many are I am sure), but some of those meds did have a positive effect with my MIL and gave her some much appreciated plateaus in her disease progression. No, the plateaus did not last long, but they did occur. Don't forget, also, that some medications can take quite some time to reach therapeutic levels in a patient. These plateaus also gave family a needed time for some valued interactions, which might otherwise have not been possible.
One of the concerns the doctors might have over taking out your husband's pacemaker could be the fact (supported by studies) that when a dementia patient has a medical procedure they more often than not endure a noticeable downward drop in their cognitive functioning. This was true with my MIL to the point, later in her disease progression, where any travel outside her home came with detrimental decline.
I wish you success in finding the 'right' combination of help for your husband! We were blessed to have worked with a fabulous dementia doctor at Mayo in Rochester, MN for my MIL and my wife. Not sure if that is an option or not, but he and his team were terrific.
Peace and strength,
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1 Reaction#@IndianaScott
Thank you for your comments. Yes, a surgery, and then second surgery to repair damage from the first surgery, made a detrimental difference in my husband's memory, and necessitated my early "retirement". So, I am aware of that, but I think that, unless the all-day, everyday headaches are normal for this diagnosis, it is important to be able to see what is going on inside his head. But, I really don't know. I just see that he is miserable, and there is a roadblock to testing that may lead to relief for him. On the other hand, I don't want to make the dementia worse, either. On still another hand, it is a degenerative situation, and will only deteriorate anyway. What I do know, is that the headaches are debilitating, I have been told not to give him any OTC pain relievers (in case he's having bounce-back headaches), and he now spends a lot of time just sitting, eyes closed, or sleeping, as methods of coping with the pain, and I don't think that's a good thing, either.
Hi @martyc2016, welcome to the Caregivers group. You may also be interested in this discussion in the Brain Tumor group called "My husband was dx with glioblastoma" http://mayocl.in/2bOiulI
We look forward to learning more about your and your wife.