Introductions: Are you caring for someone with dementia?

Hi @virginiatc - Welcome to the Connect community! I think you are doing a great job at navigating the forum, but if you have any questions or find something you are struggling with, shout out and one of us can help you. I'm sorry to hear about your husband's dementia. My husband was diagnosed with Mild Cognitive Impairment in 2015 and it has progressed into dementia now so I have some understanding of what it means to be a caregiver in this situation. Can you tell more about your husband's situation? When was he diagnosed? What would you say are the biggest challenges you are facing now?

Also, just FYI, there's a page you may be interested in checking out where there is more information on some aspects of cognitive impairment:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

Hi @virginiatc Welcome to Mayo Connect and congratulations! You got it all correct! You are here and doing it right (you really can't break anything here)! While I am sorry to read of your husband's healthcare journey, I am pleased to e-meet you and am happy you found Mayo Connect!

I found this site when I was taking care of my wife and I was feeling overwhelmed, isolated, and exhausted. The Connect community helped me overcome all three of those and I hope it does the same for you! This is a wonderful group of caregivers and concerned folks who are a wealth of information, hints, tips, and support!

If you are like me, nothing about computers is 'basic', but rather more like magic so I fumble with it often myself.

I don't want to pry, but how long have you been caregiving now and what are your biggest challenges?

Strength, courage, and peace!

My caregiving life began with taking in my mother 19 years ago and keeping her with me until her death 5 yrs later at age 99. That was my training, and above all it was my way of helping to make her final years better than they would have been. She was my hero and I felt I owed her plenty. Than a few years later my husband started doing things out of character and with some help from our dr. we came to the conclusion he was dealing with dementia symptoms. No in depth testing was ordered or done. He has become more and more dependent on me, unable to drive happened 8 years ago. All of his participating activities ended, like golfing, running, etc. Now he needs help with everything, all his A.D.L. need assistance from me. It is just he and me. And I was very able until my spinal health started to require therapy and more therapy. After 2 MRI's, and more physical therapy I was diagnosed with degenerative disc disease with severe stenosis in the Lumbar spine which I am now getting injections for pain. Tomorrow will be my 3rd injection. May have to go to a plan B which will probably be surgery. I am 77 and in otherwise good health. As long as I can keep on my feet and be able to move without pain, I think I can take care of my husband. My challenges now are getting rid of the constant pain that is effecting my everyday life, and of course staying optimistic as we go thru each day together. My husband is aware he is not his old self, he seems powerless to help in any way. One thing I am so thankful for, he is not a mean person and if I take him by the hand and ask him to go with me to the bathroom to take his shower, he will. He initiates nothing and does not remember things that happened yesterday. We take one day at a time. That is the only way I have survived, I believe. My love for this man keeps me going. And now, this site, with your posts will help alleviate the lonesome feeling. Thank you.

Thank you for the welcome. I hope you can read what I wrote to IndianaScott as it answers your questions, I hope. Thank you for the page information link.

Thank you, @virginiatc for the background. I agree so very much with your statement that love keeps you going. It was all that allowed me to be my wife's caregiver for her 14+ years.

I can also understand your concern about your back. After the first four years of caregiving I had to have a spinal fusion and during the final years injured my left knee and developed carpel tunnel in both hands from repetitive lifting. It is good to hear you are seeing a doctor to take care of your back! I hear those shots can be a huge help!

Caregivers are truly amazing people! We get thrown into the breech and do amazing things for those we love! You are to be congratulated on all you did for your Mom and all you are doing for your husband.

It is so challenging when our loved ones can't help even though we know they want to and wish they could!

Again, I am really glad you have found Mayo Connect!

Looking forward to hearing from you again whenever you want to visit.

I am coming into this conversation rather late but it may help those with limited resources. I use the grocery store plastic bags that, I, and another save for this purpose, and tie it off. It is deposited in a closed trash can out in the garage. It works so far but only one or two pullups are being soiled a day as he still has some control of his eliminations. By the way, I was having to buy the pull ups but now I get them from the VA and they cover that expense and we are grateful. Another trick that may have been mentioned before I joined here is this. Men's shaving cream makes a wonderful soap applied to the private area when there is feces clinging to the hair. It seems to release better and make the experience easier on everyone. Smells better too. Of course, rinse it off completely. The money I saved for the bags, I have spent at Sam's to buy the big box of disposable gloves. Hope this helps someone who is reluctant to ask these sticky questions.

@virginiatc hi thanks for the tips. I am caregiver for my husb. He was diagnosed with PPA, non stroke related so speech therapy was not successful. Alzheimer dementia has been manifesting itself rather quickly. He was falling and has bladder and prostrate issues. Up every 45 min. at nite to urinate, we were both getting no sleep as I was unable to allow him to get up alone. Ended up using a urinal so he stayed in bed and I did not have to help him up to get out of bed. I have back issues. He has been in nursing home for 3 weeks. It's not going well. Unable to communicate but was pleasant at home. Now he is a different person totally. Angry, not sleeping at night, wandering and Won't let anyone help him in case he falls. It is a long journey.

Agreed, @dianajane a long journey. I know each patient with dementia is different, but in my studying of this disease while I worked for the national Alzheimer’s Association I remember any change for a dementia patient most often caused a downward change in them. This was certainly true of my MIL with hers.

It is a tough road for our loved ones and us as caregivers.

Strength, courage, and peace

@dianajane, I am sorry you have to deal with those sleepless nights along with everything else. The urinal is a great idea and one I may use when and if the time comes. I used a bed side commode for my mother when she was with me but I needed to transfer her and she was an almost complete lift. We perfected the transfer but I think it took its toll on my back. I think your husband may feel "lost" with this change. If it is a permanent move for him, I hope he makes an adjustment soon. I sure hope you are getting good sleep and taking care of yourself in spite of the worry. One day at a time.

@virginia thanks for your thoughts. Haven't been able to go to see him for 2 days. We are in Michigan and road conditions and temps are keeping everyone home. Schools and businesses all closed. I've talked to him on phone, seems to understand why I am not there. I am trying to get a grip and I know he is being taken care of..