The Cavalry Is Not Coming

MelissaNH · May 5

https://alzconnected.org/discussion/62396/the-cavalry-is-not-coming

This is a wonderful post. Thank you so much for writing it, @Bill_2001 and thank you, @Jeanne C. for all of the work you have done on this site! :)

Arrowhead · May 5

I remember when you made that post, and it helped me. Thank you. I have friends who have delt with this disease, and they were helpful, but I was still on my own. I recently placed my wife in memory care after fighting this battle for over seven years. I hope that those who are reading it for the first time will benefit from it as I did.

Drapper · May 6

thank you for reposting. It is more meaningful to me each time I read it. The acceptance of what life is now, is key to making it through this.

Carmen M · May 6

Thank you for the post and you are absolutely correct. It's a lonely road and its just my LO and myself the caregiver. My LO just completed a six week rehab due to a UTI so his daughter from out of state is staying with us for a month becos I felt I needed help to keep him on track and help with mobility issues. His daughter means well but it has been more of a distraction than help. She makes suggestions thinking I have not tried them before gives her opinion on how to deal with matters. This makes me so angry becos she doesn't know or even experience 1% of what I have to deal with. Yes there is NO CAVALRY to the rescue.

LaneyG · May 6

Welcome back Bill and thank you. I remember your breaking the news to me early on about the Calvary that wouldn’t be coming. I think I might have been newer to the forum and just starting the journey. It was eye opening and just what I needed to hear to get my act together and just move forward.

michiganpat · May 6

Thanks Bill for reposting this. I needed to read it again. Family are well meaning but just can't understand. Carmen, I so understand. Our daughter tries but just doesn't get it. She doesn't see how he behaves 5 minutes after she leaves. So I have become mostly silent. This posting of Bill's gets it.

DTSbuddy · May 6

https://alzconnected.org/discussion/comment/150348#Comment_150348

Hi Vpomnitz Valerie. I'm so sorry. My DH is in year four. In year one, we cried together, before his self-awareness of his disease faded. Then I cried alone but in front of him, and he still had some empathy, and would try to make me feel better. Then, in year three, my tears just confused and agitated him. I got better at avoiding or dealing with situations that provoked his distress: my displays of irritation or sadness, movies with arguments or violence, my contradicting him or arguing with him,, hunger, darkness, fast movements, loud noises etc. I learned how to turn away and get busy with something else until his short term memory lost the train of thought, and I could do a little dance, or sing or get him something to eat and the danger of his anger would pass. We still have some sort of confrontation every week, and I get a fight or flight thumping heart as he starts to get angry, but I am getter better at avoiding triggering his distress. Maybe this will not help you, but I dearly hope you will find things that will. This is not to say, that what happens is all our fault, but rather that there are things we can do. Utube has a bunch of videos on dealing with dementia and aggression which have helped me. Please let me know how you are..

SSHarkey · May 6

I’ll, so good to see you back! And even better to know you’re doing well, all things considered! Keep us updated! SH

Denise1847 · May 6

Welcome back! Your post is such a great post that articulates our journey. Thank you.

Drapper · May 6

https://alzconnected.org/discussion/comment/208261#Comment_208261

that is my life’s exactly. You described it to a tee. I try to not set my husband off. I know my mood influences his. Sometimes it gets to me and I do argue back. Although that never goes well as you know. I realized lately that alot of our issues happen on the weekend. I think in my mind I still see the weekend as a different type of day than the others. Should be seeing friends. Going to dinner. I must be sending a frustration message on some unconscious level as my crazy expectations are not being met. I need to work on this.

northernlady · May 6

Thank you for this. Newly diagnosed husband was/is the love of my life and excellent partner in business and family.

This diagnosis and the failure of support from the Healthcare system left me reeling with anger, despair, extreme sadness.

One statement in your original post got to me. I am the king of my castle. Whatever it takes to make MY life easier will make me a better caretaker. Mind blown.

Thhank you.

Bill_2001 · May 6

Greetings My Friends,

I am happy this this post has helped so many of you. When I began posting, it was mostly cries of despair and frustration. Once I realized that I am truly on my own, I had to share.

Remember, caregivers, you are in charge now. This part of the post receives a lot of attention for good reason. We feel trapped and helpless due to this awful disease, and the slow loss of our loved one.

We are not helpless.

No matter what role you had in your marriage, be it homemaker or provider; no matter if you made most of the decisions or if you deferred those decisions to your loved one for decades, it no longer matters.

You are the boss now.

Do whatever you can to make caregiving easier for you. Your loved one can longer make decisions or command any part of your home and life. If there are positive, simplifying changes that you can make to your environment, finances, or daily routine, you no longer need to seek the permission or blessing of your loved one.

You may do so now. We may not have any control over our loved one's disease, but we can control our environment. Do so in a manner that favors your tastes, your finances, and your future.

Taking care of your environment is taking care of yourself. And this helps you get through another day.

Blessings, Bill_2001

fmb · May 7

@Bill_2001 I really appreciate your comment of Oct 2022 (found on page 2 of the comments to this post) about making your home surroundings and schedule work for you. I have been struggling with feelings of disloyalty, guilt and grief as I donate DH's belongings and disassemble his bedroom in order for me to move in to it.

I recently went back and read all of your posts that are available on the new platform. Your insight and the honesty evident in your writing is amazing. I was especially touched by the post entitled "I Miss a Real Wife" (July 16, 2022). I read it and wept as I thought about my own marriage and my future now that DH is in Stage 7 ALZ.

Thank you for sharing with us. Please continue to write when you are moved to do so.

DTSbuddy · May 7

https://alzconnected.org/discussion/comment/208311#Comment_208311

Hi Drapper, Our sone has hired a nanny to come over once a week with our grandchild. She has turned out to be a great conversationalist, and having someone normal to chat with has really made it easier to stay balanced with my husband's needs. We are looking to hire a companion for us, him, me, on another day of the week. I figure it's worth it if it keeps him out of Memory Care. Good luck to you.

Bebobra · May 7

https://alzconnected.org/discussion/comment/208347#Comment_208347

Thank you so much for this! It’s a difficult road to be on, yet your opening post here and this one truly resonates.

God bless you as you continue to love your wife.

🙏🌺

millyfern · May 7

https://alzconnected.org/discussion/comment/150348#Comment_150348

my journey with my DH has also just begun. We are doing fine since he is willing to accept the diagnosis and works with me to find solutions. My problem is mostly exhaustion. My DH has REM sleep disorder and it has recently flared up. He talks, yells, swears and throws himself out of bed. We sleep in separate rooms because of that but I still hear him all night and when I hear him crash to the floor or against the wall I naturally get up to help him back to bed and check to see if he’s hurt. Needless to say I’m very tired.

Jazzma · May 9

Bill, I copied your 'The Cavalry Is Not Coming' some months ago and saved it. It helped me take a different view of the changes in my life that were so painful. My husband is in MC now and there are times when all I want is to bring him back home. Being the keeper of my own castle here is a good distraction. Learning how to live my life without him here is tough. Thanks for your words.

wose · May 9

Thank you o’ wise one. I screenshot this one and refer daily💜Bless you!

KatsEye · August 26

https://alzconnected.org/discussion/62396/the-cavalry-is-not-coming

Hi Bill,

First time reading and first post ever on this site.

My 90 yr old mother is taking care of my 90 yr. Old stepfather diagnosed with Dementia and Alzheimers. We 3 kids are the "Calvary" at the moment and just now seeing the overwhelming amount of information we aren't aware of and what steps to take. In touch with attorneys and Medicare/aid along with VA.

So worried for mom as her health is failing from all the emotional stress. I'm in NY and she is in CO. 2 bros are in CO which helps. Looking for any insight one has to offer. Our next steps are to have a 3day eval but getting great resistance from D stating he'll kill himself first. How to convey our love and get him to safety without straightjackets? So sad. Thank you everyone for your invaluable insight 🙏

K

Iris L. · August 26

Someone can take FML (family medical leave) because someone needs to be on-site to straighten things out and to get control and to get things in order. It will take time.

If he is threatening self harm, remove guns, knives, pills etc, any possible weapons. Don't leave him alone! Murder-suicide happens all the time! Call 911 and get him admitted to a geriatric psychiatric unit.

Iris

The Cavalry Is Not Coming

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