Longest Stint as Caregiver

Hi, @pchap I’m Scott and I was my wife’s sole caregiver for her entire 14+ year war.

All I can say is I lived by the AA mantra of “one day at a time”.

Strength, Courage, & Peace

So very sorry to hear this…keep going day by day giving the best care to your wife that you’re able to give…and be thankful that you can help her through this cruel disease…

@pchap
I don’t know how you’ve done this for so long. At 7 months and counting I feel my sanity slipping. When you say you’re caring for her by yourself, I totally get it. I do the same for my mom. I truly think people don’t understand what that means until they’ve lived it. Literally every single moment.
I just started last week with a companion coming in for 3 hours two times a week. I haven’t been able to relax into that yet. But I’m hoping I will.
So recently I found out Medicare will now pay for an aide to come into your home if your wife’s Dr says it is a hardship for her to leave the home. I have to pay out of pocket because there are no home aides in my area that will come without a nurse or therapist. But please, take the 5 minutes when she’s asleep and call Medicare, if that is your insurance.
Please for your own sake, assign a day every week for a few hours that your daughter takes over. Please don’t ask for it at this point, tell her that is what you need.
Angels come in all sizes. I believe caregivers are angels on earth. You may be the biggest angel of all.
Please take care of yourself and reach out anywhere for help. Love yourself a little bit too

Welcome to this webpage. It has helped me immeasurably to know that I can express my feelings-anger, fear, depression, grief on this site and not be judged but rather receive support and helpful comments and ideas. But this is only one way to help yourself (and your wife indirectly). Please find out as much as you can about dementia. The various types, the different stages, the symptoms of each stage. I did and it gave me a sense of control over my situation with my husband's vascular dementia. Knowledge is power. Most of us caregivers feel like we don't have any power over this devastating disease. We don't but with knowledge we do obtain we have the power to create a plan to deal with our specific situation. I highly recommend going to Teepa Snow's website: Positive Approach to Caregiving. I took the Champion courses (4 live online sessions) that gave me so much valuable information about positive caregiving for my husband AND how to recognize my emotions and how to deal with them. I urge you to give yourself the benefit of this knowledge. It is a way of taking care of yourself. God bless you for all that you do for your wife. You are doing God's work here on earth.

I'm over 14 years in the battle and my biggest saving grace has been Easter Seals day care. Here in NH they are a life saver for me. She goes to Easter Seals 3 days a week from 9 to 3 and even though I miss her, it's nice to be able to go to the local coffee shop for a cup of Joe or take our dog on a 2-3 mile walk in the woods. I hope you can find a similar setup like Easter Seals in your neighborhood, they are a God send. I'm in a similar battle for over 14 years and It's an awesome night when I finish cooking and we sit down for dinner and my wife of 57 years knows who I am! Those nights are few and far between . Her MD has told me she should be in a memory care unit but I don't think I could live without her in the house. I guess I'm selfish that way. I don't think anyone making $10-$20 an hour can take care of her better than me.

To every caregiver, I will send kind thoughts your way. I was the caregiver for my wife who had Alzheimers Disease for 10 years, 8 years in my home and 2 years in a care center. For Judy and I, it was a very different chapter in our life, not what we had planned, but it was not all bad.
We had lots of help from friends, neighbors, and family. We were prepared before hand when they asked, "Is there anything I can do to help?" Usually it wasn't just a rhetorical question, they really did want to help. I would suggest when we would appreciate them to visit Judy and be a companion with her while I had appointments or went grocery shopping or other things.
Our town had a local office called Family Caregiver Support Program. I provided good information to me about community resources that were very helpful.
I also made good use of the Visiting Angels visits. Sabrina became a loving caregiver once a week. She called Judy "The Queen" and gave her a "spa treatment" ( a shower with a lotion and special care).
Susie, our next door neighbor, came over once a week for a few hours to be a companion with Judy. They both enjoyed watching "The Great British Baking Show" or other shows.
I benefitted from joining a Caregivers Support Group that met once a month for lunch. At first I got help when I had a new issue that I was dealing with and the group would come up with many ideas of how they had dealt with a similar situation. Often one of the ideas would be of real help to me. Later I was able to help new members of the group because of the years of experience I had had.
I also took advantage of every class for caregivers offered by the local Alzheimers Association office. One session was called "Powerful Tools for Caregivers" and used a book with that title that you can buy from a bookstore or Amazon.
Judy and I had many moments of joy after reading Jolene Brackley's book Creating Moments of Joy. We both enjoyed sitting on the deck, watching the cumulus clouds float by, Canadian geese flying by over the irrigation canal, dogs chasing squirrels, and just enjoying being outside. We enjoyed listening to our favorite music. Sometimes we enjoyed just going our for a ride in the country.
I wish for the best for each of you. Take good care of yourself!

Yes, this is a difficult road. My husband of 36 years had a double life that I found out about a few years before he was diagnosed. Some days he thinks I am her and it is so painful. I know his cognitive ability is limited so I try to let it go. Our kids and step kids know about it and try to be so loving to me. It's something that takes forgiveness and being a strong Christian --a lot of prayers.

@lulululu

God bless you….

You Sir, need to get in touch with a state or local agency for guidance. There are organizations, such as the one that provided me assistance while I cared for my wife for six years (Samaritan). You will burn out and end up needing more assistance then your wife, if you don't get some help.