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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
I 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.
Replies to "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..."
#@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.
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
I 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
Thank you. I've already been told it is a no go with this pacemaker. His was implanted in 2010, but they've made advances since then. His is "old".
@shortshot80
My heart is with you. I am sending you strength through kind and positive thoughts.
Thank you, I really need strength & prayers from everywhere. Just really emotional for the past several month. am not a "crier" complainer, or anything like that. I have been a strong person in I anything, including jobs I have had, family. This stuff is very
not me! Nancy
Hi @shortshot80. No need to apologize nor explain. We fellow caregivers get it! Emotions run the entire gamut -- sometime in sync with your patient's often times at odd with them. I was often criticized for crying and complaining, when all I was doing was explaining!
For awhile I would send periodic updates on my wife's condition to family members and was told to my face I was sending them to get attention, get people to feel sorry for me, drum up sympathy, and whine. It was devastating to hear that. Since no one was asking about, or helping with, my wife I thought I was doing right by keeping family in the loop on her condition and care. Needless to say after that input I quit them to anyone other than our children.
So there is no way we think communicating is crying or complaining! We know all caregivers sometimes need a shoulder to cry on and a nonjudgmental ear to listen. It is our hope we provide that here.
Communicating your concerns, fears, anger, etc. on caregiving is part of the journey and sometimes I found just saying something helped lift the burden of the journey.
Peace and strength,
@IndianaScott Your maturity and wisdom to be able to respond (rather than react) to such criticism is unbelievable. Not many of us could have digested that criticism with such grace! Kudos!! Teresa
Oh my gosh! That IS rough! No, you didn't deserve that, and yes, you'd think they would have appreciated being kept in the loop. Gosh - "family!". You may not see it, but they may find themselves feeling your pain some day, in some other situation, with someone they love. Not to wish it on anyone else. I'm sure we don't do that. But, life is about learning. Karma! In the mean time, as I have noted previously, I feel it, too, from family and friends - the lack of caring, lack of communication, lack of help, the disappearing act. I also feel that this has been given to me for a number of reasons - because I am strong enough, even if I don't always feel it, and to set a good example, as you did in caring for your wife, and as my mother did, in caring so well, and so long, for my father.
Right now, once again, I am not feeling a lot of love from my husband's doctors for either my husband or for me. I know I can be a rather tough old bird, so I try to handle them with kid gloves so they don't take any possible negative feelings toward me, out on him, or so they don't just want to get us out of their offices, which, as we grow older, is the overwhelming feeling I get from them. I am very aware of the fact that we are all going to "die". I am not asking them to try to prolong things. I will die, my husband will die, the doctors will die, in some order of which we are not aware. What I don't understand is the seeming lack of consideration for quality of life between this point and that. We just received test results that could warrant further testing and treatment for my husband; however the doctor, citing only one of my husband's many symptoms, stated that he was not concerned about these results. I will, nicely, point out the rest of his symptoms, and, hopefully, not be considered a pest for doing so, and see if he still thinks it is not worth further testing on my husband, and, WHY it is not worth it!
The other thing that irks me, is that the two studies, testing new medications, that I have tried to get my husband into, determined that his dementia is too advanced for their studies. I understand that they need to set parameters to determine the efficacy of the medications they are testing, but when a condition has no cure, and the treatments are few and quite temporary, why not try new treatments at all stages? Why not try them on several groups of patients at different stages? Wouldn't that give even more information? This is all so frustrating!
O. K. Many thanks for this site and for this opportunity to get things off my chest, and, maybe, receive information or suggestions from others.
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Hello @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,