New and Grieving with Questions

Lkrielow99

Thanks for adding me to the group. I am new to this beast. My DH was diagnosed July 17 (Monday) with Alzheimer’s and I am grieving. I don’t even know what to do and it’s hard to even breathe. I just cry. I’ve being seeing his decline for a couple years and when we had a defining moment, it took six months to get the appointment. I try to be patient, I try to be kind, I try to get him out of the house often and socialize with his friends. Here are my questions;

I love my part-time work from home, it brings in good money. I don’t want to regret working, but he is literally in the next room. Can anyone give me some thoughts about this?

His Mother died about 5 years ago from this beast. When do I tell his family?
Thanks in advance for helping

Ed1937

Welcome, and I'm sorry you two are dealing with this now. Your emotions are normal. Just about all of us went through that.

We have people who are working from home, and they will reply too. I'll leave this part all up to them.

There will be a lot of choices for you to make, and one size does not fit all. In my opinion, it is better to get the word out sooner rather than later, at least to those close to you two. I called a family meeting right after my wife was diagnosed, and I didn't pull any punches when I told them what it meant. I'm glad I did that, and when I asked them what they thought of it, every one of them told me they were glad I told them.

You never know how people will react. Some families kind of fall apart when they find out, while others pull together. Close friends might become more scarce for visiting because they just don't know how to act. This is especially true when it becomes easily apparent that there is a problem.

Here is a link to an excellent article for you to read about the dementia experience. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

If you haven't yet seen a CELA (certified elder law attorney), this is something you need to do early in the disease. They can protect many assets for you, explain how Medicaid works in your state, and draw up durable powers of attorney for you, as well as many other things, depending on your specific needs.

This is an excellent forum, with members who will give you excellent advice and tips, offer understanding, and support that is hard to find. If you have any concerns, just start a new discussion to get a lot of help. We care for each other here.

TyroneSlothrop

Ella,

I work from home also, and it has been getting steadily harder. My DW has a companion who comes for 5 hours on weekdays, and I try to cram all of my work activities into those periods of relief. When the companion is not here, DW interrupts me quite often, so I find it nearly impossible to concentrate. But when she’s there, it works. I recommend this.

I also recommend sharing your and her stories with her family and friends. They are part of her circle of care; they might become more and more important to you.

M1

Hi, welcome to the forum, it can be invaluable support. I work part-time from home as well and this was a real blessing during earlier parts of my partners illness. Yes there were many interruptions (we never did have home help though i tried to find it) ,but for the most part it worked, i didn't have to be on the phone very often and would just warn her when i did. She has been in memory care since the spring of 2022,but for us the working from home was very feasible.

I would tell family asap. But be prepared for varied reactions, not everyone reacts with support initially. The other thing that really helps is to get legal and financial issues sorted out asap, you'll need power of attorneys, wills, etc. A certified elder law attorney is the way to go here.

Denise1847

Welcome to the forum. I am so sorry you are going through this. Take a breath, learn all you can, take care of yourself, keep that job for as long as you can and do what you can now with your partner while you still can.

Don't be surprised if some family are first in denial and tell you that you are over-reacting etc. or some withdraw. People don't know how to handle it, but they eventually come around. Tell everyone including your neighbors so that if there should be a problem, they will understand and come to your aid. This is a disease, not a crime but I realize some diseases carry an unreasonable stigma.

You will cry, get angry, be resentful, get depressed. It is all a part of the process of grief. Don't be surprised if you think, you are through all of the emotional reactions and then cycle back through the anger etc. It is a continuous process. Consider counseling, prayer, a regular exercise routine, staying social with your friends (even if just by phone), read, take up a hobby. The "36 hour day" is a wonderful book to read and Tepa Snow on You Tube will give you a great foundation.

Ernie123

I am so sorry to hear you are starting this difficult journey. My DW was diagnosed in 2012, lived at home cared for by me for 7 years and is now in very advanced stages in a LTC Memory facility. My advice, in addition to the excellent suggestions above, is to reach out to your local Alzheimer’s Society if there is one in your area. They will offer workshops about the disease and caregiving. There should be counselors who can give you advice. And maybe most important, join a support group. Over the years being able to discuss my emotions and challenges on a regular basis with other caregivers dealing with the same disease in a confidential setting with a professional moderator really saved my mental bacon. I still attend two monthly support group meetings and now find myself as a more experienced person able to share advice to those in earlier stages of caregiving and also those further along dealing with the question of when and how to move a loved one to a care facility. My experience is that talking about what is happening to me, the grief, guilt, confusion, sadness, anxiety, fear, etc , all the emotions that caregivers feel at some point, talking about these feelings with others who “ get it “ was the key to my dealing with things the best I could. About three years in I eventually realized I couldn’t deal with things on my own. Reaching out for help is difficult. But the Alzheimer’s Society is the place to start if you have an active chapter locally.

Keep is informed of how things go for you. You will find a wealth of helpful advice here on this forum.

BadMoonRising

Regarding informing his family...Have you discussed this with your husband? Is he so far gone that his opinion is of no consequence? Has he lost all agency? I urge you to take a deep breath and give you and your husband at least a week, to absorb the blow and gather your thoughts.

Lgb35

I work from home full time and plan to continue. I am 53 and my DH just turned 60. We are in the early stages. He is still working at this point. I plan to continue working as at my age I have to think about my long term future as well. My DH is very insistent I do not tell anyone but I have told a couple close family like his mom and my sister. They don’t see anything wrong when they are around him but he is good at hiding it with other people. I see things everyday. We are also in the process of preparing our legal documents. I will say it was a reality check when I cannot use him as my poa etc.

good luck 💕. We are all with you!

Lkrielow99

You all have been a blessing to me. I’ve read all the post, some I’ve copied to my notes for future reference. ED1937, the link is amazing and I’m reading slowly to take it all in. Tyrone I hope I can find someone when I need someone. M1, I appreciate your input about working from home. Denise1847, I have copied your post about grieving and it will come in waves off and on. I’m hoping I get stronger soon. Earnie123, i know I will need a physical support group. I will call around and search for one. I will definitely keep posting. Badmoonrising, great advice. My DH is not so far gone. I’m thinking I will involve him as I don’t want him to feel that he has no say in what goes on in his life. Definitely will wait until I can better comprehend and accept this diagnosis. I don’t know why I feel devastated since I’ve been watching his decline. StaceyL23, this coming week I will visit our attorney. We have wills that we’re writing many years ago. My husband doesn’t want anyone to know, but they know something is wrong. I’ll try to find the right words to convince him, we should tell the family. But, before we do that I need our legal affairs in order. I too feel I need to work. My work is very high level complex financial work, my clients have large businesses. I need to keep my mind active for my own long term health. I am 64 but never thought about shutting down just slowing down. My DH begs me to quit, he wants to travel more. So I’ve turned away work but not everything. I so appreciate all your responses. I found out yesterday my ex also has Alzheimer’s. I was destined to have to deal with this. This is my journey, this is my path and I can’t escape it. Thank you all for being here.

BadMoonRising

I don’t know why I feel devastated since I’ve been watching his decline.

He's your soulmate. Hearing and/or reading the confirmation from an authoritative source makes it real. A gut punch. I am so sorry you and your spouse are going through this.

JDancer

I have occasional Zoom meetings from home. I have to close the door and post a huge 'Do Not Disturb until..." sign so my DH won't interrupt.

LindaLouise

I, too, felt that gut punch at diagnosis even though I'd been watching the decline for at least two years. The neurologist referred to me as his caregiver for the first time, and that, along with a definite diagnosis, was a terrific shock. I didn't sleep well for weeks/months. My DH was diagnosed last October, so its been about a year. Things do settle down a bit, but it took me a long time to get over the shock/panic that the diagnosis caused! This forum is wonderful and it is so helpful to hear others are experiencing these same emotions.

sandwichone123

After my dh was diagnosed I privately told my family--my support system--what was going on, but I didn't tell his family (who are not close) until it seemed important to do so, as he was supposed to manage his parents' affairs after they passed.

When you do let people know, please be aware that some people will take it upon themselves to tell you repeatedly, "he seems fine to me," and you should have a plan so you don't take that as a personal insult to your needs or perceptions. It can really be a gut punch if you don't know it is common.