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?

Interested in more discussions like this? Go to the Caregivers Support Group.

@rmftucker

I am the primary caretaker for my 86-year-old husband. We have been married 61 years. I plan to care for him at home as long as I am able with the help of Respite workers and our family. He was officially diagnosed with Alzheimer's Disease with Vascular dementia in late July although we had been going through testing, etc, since April when I decided we needed more information and help. I had suspected it a couple years ago, when he began irrational behavior and personality changes. He has a family history of late in life dementia (mother, grandmother, maternal aunt) so I was well aware of various symptoms.
He has been using the local VA clinic as his primary medical care for the past 12 years so we began with his yearly checkup and was connected with various specialists through them. He had gone from using a cane in April to needing a wheelchair by July. We did get excellent help from them, and after the diagnosis was determined, a social worker called in just a few days to ask if we needed hospital bed, wheelchair, etc and offered to help set up respite care, day care, etc. It took a while but we now have help two days a week in our home, as well as physical therapy sessions locally 2 days a week.
He is still able to go out to eat and visit with people although he does get very tired, but we go as much as we are able.
He has been on Aricept since July and I think it is helping, as his therapist said his leg strength was better this past week. His attention span has been so short that anything would distract him, and I think that is improving.
I've been researching this disease and am so thankful for My HealtheVet for Dr. reports, appointments, etc. so I can take my time and refer to the Dr's reports repeatedly to help me understand what I can expect and need to watch for.
I know this will be a journey we are in together, and we just enjoy as much daily as possible.

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Hello @rmftucker Nice to meet you, at least electronically! It warmed my heart to read your husband got good care through the VA. So much negative press lately, it is good to know they are doing right by some of our Veterans!

I was a caregiver for my mother-in-law while she had dementia and Aricept helped her with a wonderful plateau period. I was also the primary caregiver for my wife for 14 years as she battled brain cancer and struggled with many dementia-like symptoms.

I like your comment that it is a journey taken together. You are a wise one!

I send you all the peace, courage, and strength I can.

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@macbeth

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.

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Yep, @macbeth it is a fine line we caregivers often are forced to walk with some of those in the medical community.

A sad commentary, but a very necessary discussion I believe.

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I am Donna and care for my husband with early stages dementia. I'm starting to see him drop things and constantly itching his head . Wonder if we should see the dematologist for the itching. Know he will soon have cateract surgery.

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@macbeth

@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So...I hear you. I am sending you strength, prayers, and good vibes!

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For the past several weeks, my husband has had bad headaches, then his eyes were hurting. Then he felt the back of his head and said he could feel a "lump" inside his scull at the neck line. His neck also really itched, (all the cancers he has had, has had severe itching) so, I called the doc and we saw him yesterday. He gave Bob a shot in the back of his neck of cortizone (sp) and has scheduled a cat scan for him for next week. We shall see! Am I worried? Yes! Also for my son Richard with his bone marrow red cells making too many red ones. Am I worried about my problems? Yes! But I can't do anything about them for the minute. Today I had to go to Portland, to Oral surgeon, does that hurt? Yes, have to go back and finish in couple weeks. It is a 90 mile ride each way. Am I tired? Yes. Husband gave his two cents worth on the 2 # bar of cheese that he saw in the frig! Why did I buy that, when we already had one. Cause it only cost $4.50, instead of $8.00. So with out any more discussion, I pulled out a pan, cut up some frozen bacon, white onion,
yellow pepper, cooked it all up and added it to cooked macoroni, added A bunch of chopped up cheese, cooked it till melted and put a
"large" spoonful on a plate with some cucombers and gave it to him. (I'm tired can't spell, sorry) Would you believe it he wanted more!
I done for the night. Hugs to whom ever needs one) I DO!

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Hugs right back at you!

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@donnajane

I am Donna and care for my husband with early stages dementia. I'm starting to see him drop things and constantly itching his head . Wonder if we should see the dematologist for the itching. Know he will soon have cateract surgery.

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Hello @donnajane. I am not a doctor, nor a medical professional of any kind, only a fellow caregiver, so this comes just from my experiences.

With my mother-in-law, any time an action or reaction became repetitive for longer than two days, we wrote it down and brought it to the attention of someone in her medical team. Some of these they could not counteract, but some they could offer suggestions and help with since often with my MIL's dementia, a small item ballooned as it became far more frequent and long lasting in its repetition.

Not sure of your 'layout' with your husband's doctors, but we also did our best to stack appointments so it was the least intrusive for my MIL. She struggled whenever she was out of her house.

Peace and strength,

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@macbeth

@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So...I hear you. I am sending you strength, prayers, and good vibes!

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Good morning, @shortshot80. Sorry this hug is late. I hope it helps just as much with a cup of morning coffee. I wish you a day with some sunshine and a smile from someplace. I will hold your husband in my thoughts. My wife's headaches were always problematic.

Thanks for the smile too! I remember a day my wife was insistent I get to the grocery store to buy all the ingredients to make enchiladas. Looked up a recipe (I am a terrible cook), got all the ingredients the next day, and proudly wheeled her into the kitchen to visit with me while I put them out to begin cooking her meal. She lit into me -- with why did you buy all that (insert explicative) unnecessary stuff! The cans are still in my cupboard 🙂

I am glad your husband ate and ate well! Sounds to me like some dynamite comfort food to me! 🙂

Comfort, peace, and strength to you both,

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Joyce is the name. Getting through to rational appears to be impossible now. Caring for 90 year old mother with dementia. Finally after months of searching, found a therapist and that has been a huge difference in my daily life. I'm not alone.

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Hello @joyce13 Nice to e-meet you here. I wish you the very best along your caregiving journey. It is never easy and when irrational becomes the norm it becomes ever more challenging.

So good to hear you have found support though a therapist. Awesome! We all know the isolation and loneliness that often accompanies caregiving can be one of its greater challenges.

Wishing you peace and strength!

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Hi i am new to this group my name is Kepi and i care for my husbands mom whom i love very much we moved in with her in Dec 2015 because she had some silent strokes that has left her legally blind and in Feb on the 8th she was Dx with late on set Alzhymers. In Dec i downloaded a book called the 36 Hours because i felt there was something else going on with her. On the 8th of Feb. Her secondary caregiver brought home the same book from her Dr. She was put on Aricept after her mmse was 18/30 in May her mmse was 25/30 after i looked at her lab work i noticed her vitamin B levels were way down along with her vitamin E so I also added those in February. She is doing really great. And of course we had a small dog which she now owns lololol Bella just lives mom and mom loves Miss Bella. Thank you for ketting me share and join this group.

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