Need help accepting this and dealing with what is to come.
Interested in more discussions like this? Go to the Caregivers: Dementia group.
Feeling Blessed and Greatful! We got married for our grandchild. They were so excited to see Granny marry Semaja!
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it is like you know me @janeejane You were spot on — except it was peanut M&Ms! Honest!
I know every doctor is different, but the doctors I worked with at Mayo never betrayed a confidence and conversation I had regarding some of the more brutal aspects of my wife's condition, etc. Plus her neuro doc was a master at having her 'need' to go to a neighboring room for a weigh-in, etc. so he and I could talk face-to-face.
I may know you Scott. I am a former Hoosier and IU grad. I actually took nurse medication to caregivers when I was doing Home Health… always peanut M and M’s.
Hello @birdhouseclosed Nice to e-meet you here on Mayo Connect! I am Scott and I am sorry to read of your spouse's healthcare journey. I am guessing by MCI you are referring to Mild Cognitive Impairment. If not I am sorry for the wrong guess — and I know what they say about assuming 🙂
The caregiving journey is never an easy path, but one we often find ourselves on with little warning and even less training for it. I was my wife's primary caregiver for 14+ years and a secondary caregiver for my mother-in-law, when she had dementia.
One of the best aspects, at least to me, of Connect is what a sharing community we are! While each patient's journey with their disease is unique, as is the journey of their caregiver, there is much to be gain by looking for, and asking about, hints, tips, and ideas for how to navigate the world as a caregiver.
Acceptance of seeing our loved one with a chronic, fatal disease is very difficult and for me was a very 'up and down' thing. Accepting at times, dang mad at others, depressed for some of the time, and always confusing! I wish there was a magic potion for this aspect of caregiving, but I never found it. That said, the one thing I always tried to do was remind myself, as the times got more challenging and my wife's condition deteriorated, that I was dealing with what the disease was doing to her, not what she wanted to do, say, act, etc. I also kept an old pillow in another room where I frequently would cry into it, punch it, and at time even swear at it with quite a bit of gusto!
Please feel free to ask any questions as their are loads of helpful folks here! If I may ask, how long have you been caregiving? What do you find the most challenging about this new role?
Strength, courage, and peace!
We just found out my husband has mci. It is very emotional for me right now. I watched his Mom decline for years w the dementia.
I’m on a roller coaster of emotions right now.
Hello. I am so sorry to read this and it brings back a lot of memories for me. When my mom got MCI, I didn't know the first thing about that or Alzheimer's and there really wasn't much information out there. Now there is a lot and my advice is to start learning all you can. Pace yourself and give yourself breaks. I have lots of good information on my website called A New Path for Mom. I have videos, articles and blogs. Go to the very beginning of my blogs and read how confused I was! You will need help and advice, and a lot of time to do things just for you. This Mayo Clinic Connect is a good place for support and I'm glad you found it! Take care, Virginia (www.anewpathformom.com)
@jimmyj1216 I'm so sorry to hear about your husband. I'm on the same rollercoaster as you. My husband was officially diagnosed with early onset Alzheimer's last fall. Both my mom and brother passed from it. It is a long and scary road to travel. This is a great place to find support.
One day at a time! We are over 10 years into an MCI diagnosis and it does get progressively worse, but I have learned not to have any expectations, then I’m not hurt or disappointed. Don’t argue about something. He really cannot remember. If he says he doesn’t need his meds because he already took them, I just back off, wait a few minutes, offer them again, and he usually doesn’t question it the next time.
We live very in the moment. So we enjoy the moments. It doesn’t matter that he can’t remember which team is our team, just enjoy the game.
My husband is a very intelligent professional engineer. He was our handyman, but can’t do sequential tasks any more. Sometimes I can google a problem, I follow the instructions and he contributes the manpower. For other things I just have to call a repairman.
He has become very dependent on me and doesn’t like me to be out of sight. So far, I have not had any help, but may have to do that soon, just to get a break.
He still dresses himself, but would wear the same thing every day if I didn’t intervene. Sometimes I hide what he’s already worn several times. 😜
I am blessed that he still loves me and he still loves Jesus. What more could ask?
@pattyinal you described my life. My husband is still able to be home alone and can still drive, thankfully, (He is having a driving assessment next week) but remembering to take his meds and to eat is our struggle.
What is it with dementia and cleanliness? Getting him to shower and wear clean clothes on a regular basis is a challenge. He may put on clean clothes one day, but not shower. Another day he may shower but put the dirty clothes back on again. On other days he sees no reason to do either. I'm at a loss.
Thank God he still remembers our family and loves us all dearly. He may not always put dishes away in the correct spot or remember the names of things it animals, but he still finds joy in so much. I cherish those moments.
I am into this for 15 years. A sudden cardiac arrest survivor. Resuscitated after down for 10 minutes. Inpatient rehab, outpatient rehab, a 15 year roller coaster. I was told he would never be the same but didn’t believe it. MCI and now dementia. Doctor after doctor. Tests and more tests. I did my best but it was not good enough. He still makes his bed everyday, shaves, showers and dresses appropriately but cannot carry on a conversation. It is all about him and the old days in the military. I finally was awakened by a fall I took with 3 fractures to my pelvis. Finally asked for help. Little from out VA. A lot from two aides who take turns coming a few hours everyday who unglue him from my hip. There comes a time when we all must ask for help, even as we protect them from COVID. Consider your church, friends, or hiring help. It is too much for one person. We still have a lot of living to do. Jane
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