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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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I live in a rural area, 25 miles in either direction for hospital/doctors. There is a "dial a ride" in the area, however to go to the doctors, etc is a couple of transfers. Not what I want to do. My oldest son lives with us and does all the driving. He is also a nice listener! He also is the care giver for dad for the most part. My husband "Bob sr" has a foly that the county nurse changes every three weeks, however if any problems with that comes up, Bob Jr, takes care of. Thanks to him as he has been in the same position over the years.
Nancy
@nocaregiverneededandnohelpavailable
Do you still feel energetic and want to engage socially? I am wondering if brain diseases cause one to disconnect from being social because they have lost the skills to comfortably engage with others. Perhaps the processing speed of the brain Makes chit chat difficult when one can no longer keep track of friends past and present activities. It appears to me that many believe depression is the cause of this disengagement when it could be part of a disease process that antidepressants can't address. Any thoughts?
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1 ReactionMy 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.
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1 Reaction@caregiver49
I think you are correct, in some cases, at least. Here's what I've noticed:
My husband is several years into some sort of dementia, and I have noticed that he is more withdrawn in most social situations. He is aware that he no longer processes thoughts like he used to. In addition to that, he has become very, very sensitive to noise, especially sudden and/or sharp noises, and when we are with others at a restaurant or coffee shop or bar, for instance, where plates or bottles clank or children scream, he just can't stand it. So, when we are out with others, and plates clank, or many people are talking at the same time, or someone laughs too loudly, it really throws him off. He loses his train of thought very easily. These things plus the fact that he is aware of his cognitive decline have made him less social than he used to be. He has become quite insecure. And, no, he is not depressed. Occasionally he becomes sad about what is happening to him, but it never lasts very long, and cannot, I think, be classified as depression treatable with medication.
There are times, however, when I wonder if he may need something to help him deal with anxiety, agitation, and restlessness - symptoms that have shown up very recently. We're not pill takers, and I'm not a fan of big pharma, but I'm beginning to consider asking about something very, very mild, with few or no possible side effects, if such a drug even exists. If you or any of the other caretakers are familiar with something that might work for him, please comment.
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2 Reactions@macbeth. Do you know anything about medical marajuana? Have read some about it and will try to find some verifiable results of efficacy. My thought is if smoking constricts blood vessels it can't be good for an already compromised brain. Maybe if used as a tincture or oil in tea it might be relaxing without the exposure to drugs with harsh side effects. I think it might be easier to gauge if a person could use some short term help to relax if in fact that is what it does. I have read there is Medical Marajuana that does not contain whatever causes the high. I have no idea if this is something to try or not. Just looking for ideas like everyone else has. I can find little evidence that tracking down a diagnosis or naming brain diseases like AD, Small Vessel Disease of the Brain, Chronic Fatigue Syndrome, Fibromyalgia etc, lead to help. Lots of tests without direction after the strain of exploring possibilities is difficult to accept. People who live far from specialists who rarely have answers in the end leave families wrung out and may cause more stress than value. Just my thoughts. All input appreciated
Some types of pacemakers allow for an MRI. If you know the name of the device you could google it and probably find out. The cardiologist can tell you also. Best of luck
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1 ReactionI have a pacemaker too, I was told no MRI's, It might depend on how old it is. Also I will be having a cat scan sometime this month, to see if either of the lung cancer is growing then to the oncologist. I have been really tired, emotional for the past several weeks and not sleeping very good. Guess lung cancers, all cancer does odd things to your body. I went to my Bible study program yesterday and along with the study, I found that there five ladies plus some of their husbands with cancer here in my Friday Bible study and more know someone in this little town (perhaps 800 full time citizens) so our Bible study ladies will be our support group. Will see how that goes. At least that is a place I feel I can cry if I need to. Nancy Bush
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2 ReactionsHi again @macbeth. I noticed with my wife the amount of energy she required for socialization at times was not how she wished to spend that energy. Focusing on others, especially as her eyesight, hearing, and cognition declined was highly energy intensive for her, so she chose to limit it.
She also suffered her entire 14 years with debilitating anxiety. I can only suggest, based on my wife's experience with her anxiety, you might want to talk to your medical team in an effort to try and avoid letting the anxiety get too far ahead of any help, which might be able to be provided by medications
Peace and strength,
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1 Reaction@caregiver49
Thank you so much for your thoughts. I, too, thought about medical marijuana, and asked about it the last time we were at the VA, and was told that, since the VA is a federal agency, and the Feds do not approve of medical marijuana, even in states where it is legal, that is not an option through them, but, of course, I would be free to pursue that through a private or 'regular' clinic. The doctor at the VA also told me, at that time, that it may exacerbate the dementia. I really appreciate your thoughts and ideas, and agree with them.
As far as the back and forth diagnoses, I also agree with you. I don't want to get political here, but I must, but just marginally. My husband, a Vietnam vet, already suffers from ischemic heart disease, a condition more prevalent among Vietnam vets due to Agent Orange exposure. There is nothing in the make-up of ischemia, that directs it specifically to the blood vessels of the heart, and it seems like a no-brainier, to me, that it can build up anywhere, including the blood vessels to the brain. I have filed claims several times, but, since this has not yet been officially recognized by the government as a result of AO exposure, the claims have been denied. I have explained my position to doctors at the VA, but they always have always disagreed, until, finally, a comp doctor took out a list of recognized Agent Orange exposure related diseases, handed it to me, and told me that those items on the list were the only things she could discuss with me, that, since AO exposure already had been linked to a higher rate of Parkinson's in Vietnam vets, that it could be, and probably will be linked to a higher rate of dementia and early onset dementia in Vietnam vets some day, but that it will be after many more years of testing. In my nasty, little, cynical mind, I'm thinking, "Yeah, you're just waiting for more of them to die to limit your liability." They diagnosed my husband with Alzheimer's, but friends and relatives who have had family members diagnosed with Alzheimer's all agree that whatever my husband has is different. We all feel that they are just trying to limit their liability. And, yes, there may have been recent improvements in the VA, but they still have a long way to go.
So, now you have it...my feelings about the government and Agent Orange exposure. With this, I will apologize to those of you whom I may have offended with my anger and cynicism, and I will try not to bring this up again on this site, unless invited. Really, at this point there is no more to say, except that, I feel so strongly about this that, even if my husband would pass tomorrow, I will continue to fight for Vietnam vets on this issue.
@IndianaScott
Thank you. In spite of his difficulties, my husband is the one who most often wants to go out. We don't really have a medical "team", since the doctors who come to our local clinic seem to keep moving on to bigger and better places, but I will try to find a local doctor who will be helpful in this area. My husband also utilizes a VA clinic, but it is 45 miles away, and they seem, generally, overworked and uninterested. But, I appreciate the advice, and will try to get on that.