Introductions: Are you caring for someone with dementia?

Sometimes a spouse can never actually become a caregiver and take charge of the situation. Our family could never get my late husband diagnosed, so we could not direct any care for his disorders, and it almost drove some of us nuts. Going to court would have failed, we were told by the attorneys. So we lived with a belligerent, obstinate man who almost destroyed the family business due to lack of management. He thought it should run itself, I guess. He spent any money he could get his hands on for his own plans, We did not know where he was or what he was doing during some days when he was needed at the company for small errands he could have handled. He ate in restaurants more than once during the day and was addicted to eating. His lies became a constant effort to try to keep him in reality, and sometimes he spoke in a sane manner as if there were no deficits. Other days, it was awful to predict. I could not care for him because he did not allow any care. He said he was fine and I was the problem. He died in short order when his prostate cancer returned after insufficient treatment and a tumor wrapped around his spine and grew upward. So I was never a caregiver, just a praying person who stood by and watched the decline occur. No one would believe me, because sometimes he was rational. It was a huge funeral. I was married 50 years. I inherited a nice place to live but had no savings or plan for retirement. It took four years to work out the financial issues and then the recession hit us all. I survived that and now can live well with a large garden and some help from my family. But I was never able to be a care giver. A housekeeper, a cook, but not a caregiver.
I raised three wonderful children and five marvelous grandchildren. I am so blessed, but I still study dementia. Dorisena

Hi folks, I am thankful for your comments. My wife has early onset Alzheimers. She was first diagnosed in November of 2019. I would say she has had the disease for at least 2 1/2 years. She appears to be in the moderate stage. She is still able to move around well and can bathe and eat. Personal hygiene is declining and as well as memory (obviously). I haven't gotten to the point of having to be home full time yet but we are 55 years old and financially, I'm hoping I have more time before I have to think about staying home.
Her medicare doesn't kick in until December. One thing that I have learned from God is to stay calm all of the time. I try to always answer her repeated questions as if she were asking me the first time. And I've also learned to not ask questions that can bring about anxiety or confusion as she will get a headache, shut down verbally, and sleep most of the day. My heart goes out to all of you wonderful people who are caregivers for your loved ones. May God bless you and your family. This disease is very heart breaking. I am not looking forwaed to the day when she doesn't remember our children's names.

@greff Early onset Alzheimer's is one of the most heartbreaking because it is so unexpected. My son-in-law just lost his Mom to it, and in spite of efforts by his wife, an experienced memory-care nurse, he and his family were reluctant to seek assistance, which led to her premature death. Please explore you local resources now, before a crisis. If you possibly can do it, involve your adult children and maybe even your wife's siblings in the research and decision-making. This is a very difficult path to walk by yourself. Please reach out to this community for support. Sue

Thank you for your reply. I am super blessed to have 4 adult children who have been active with helping take care of my wife when I am at work. We all work as a team and my kids are willing to do whatever it takes (although the worst is yet to come). We also have a wonderful neurologist and medical staff that are empathetic and gentle with my wife (which makes all the difference to her). I have researched all the stages and behavioral signs and symptoms that accompany each stage. So far, God has intervened and she has not displayed any behavioral outbursts. I am an addictions counselor and work at a community counseling center with a wealth of knowledge at my finger tips. They have been very accommodating when I need to leave to check on her. I so agree that I will need on-going support and guidance through this trial, as will my kids. Best of all, God has His mighty hand on all of us. Thanks for your advice. Lastly, my heart goes out to you and your family. God bless.

Hello @greff I am sorry to read of your wife's diagnosis and your path as a caregiver. My MIL had early onset dementia and my wife fought many dementia-like symptoms during her 14+ year war with brain cancer.

I know every patient, the disease, and their fight through it is unique so I offer only a couple of lessons I learned during my years of caregiving. As a counselor none of these are probably new, but just in case.

First, I saw my wife's family lose (or waste) many opportunities to settle matters early in my MIL's disease progression. Then all of a sudden that window closed and they were left to wonder 'what would Mom want?' or 'what would Mom have wanted us to decide here'. It was unfortunate for everyone involved for sure.

My wife and I used this lesson well and she and I had many extremely difficult, but just as necessary, discussions on significant issues immediately upon her diagnosis. Many were mundane legal/estate issues, but included financial and medical POAs, advance medical directives, appropriate HIPPA approvals for sharing medical information, living wills, etc.

After those we then moved on to the far more personal issues as she made decisions on her final wishes, giving certain personal items to family and friends, made plans to make some amends, and more. As tough and at times uncomfortable these discussions were, they paid huge dividends by bringing my wife a tiny bit of peace of mind, helped me be a better guide for her on her path, and turned out to be extremely helpful to our adult children who were able to totally avoid those 'what would Mom have wanted' questions.

I wish you strength, courage, and peace

Thanks Scott for your insight and encouragement. I have the POA's set up, wills written for both her and I, and my children assigned as executors of the estate. I still have to get some other stuff done but we're making progress I think. Your right about the kids. Mine don't like those discussions but I still have to include them so that they are able to take over in case something happens to me. I'm not in the best of health either. All of the banking, medical, and other financial entities that we work with have POA's on file. Man that makes a huge difference. Without them it is impossible to get things done. I learned this lessen when I was my brother's caregiver when he was dying from lung cancer. I'm thankful that we signed medical POA's given me the decision making rights to care for him. I have and am still learning about taking care of all that stuff ahead of time instead of waiting until it's too late. There is alot to do for sure.

May God comfort you and your family Scott.

Just an addition to Scott's wise words. Those of us beginning this journey have a hard road ahead. My husband and I made sure our wills were updated, and we had the health and financial forms signed and notarized, and the funeral arrangements all taken care of about 4 years ago while he was able to help make those decisions and sign his hame. I'm so glad we did, as it made the transition so much easier when I had to make all the decisions with Medicaid and Veterans pension 6 months later when we had to admit him to a care center.
He died a week ago, February 8, and we will have memorial services tomorrow so this past week has been a little hectic, but could have been so much worse. We just had to visit with funeral home to make final preparations, but the financial matters were all taken care of. Still plenty to do, but time to take care of that the next few weeks.
It is hard but I know he is in a better place. He had very little quality of health in the past year, and slept most of the time.

@rmftucker I am so sorry for your loss. I am sure this is an incredibly difficult time. I send you my best wishes for continued strength, courage, and some peace.

Thanks @greff I appreciate the kind words.