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Navigating My Husband's Alzheimer's Disease

"The single hardest thing about having a person with Alzheimer’s is the future, because we really, we just go day to day."

Mary Catherine O'Brien

Transcript

I believe Greg was hiding his progression of Alzheimer’s from us.  So, we didn’t know as much, although what we had seen, I’d seen an increase in his frustration, in his anger, in his impatience, and that caused a lot of turmoil in our marriage and our family. I think he was hiding it, and he knew something was wrong, and once we got the diagnosis that was a relief.  It was devastating, but now we had something to tag onto what was happening to him. 

So, I always say get the diagnosis.  Go for it.  Don’t be afraid of it.  It only gives you more peace and strategies.  Like, if I didn’t know that he had Alzheimer’s I would not have the strategies that I have today and the support and finding out from people what to do.

My responsibilities since he has Alzheimer’s it’s more–I’m now all-encompassing the house, the finances, the bills.  We need an electrician.  We need a plumber.  We need this done.  His focus right now is on his writing and what he can accomplish in a day, and he doesn’t have a lot of reserve to be doing the miniscule things that require everyday living.  So, that has been increased tremendously, and the driving.

My son, Conor, and I, we’re the primary drivers now.  If he needs to be picked up, because he’s coming back from a meeting in Nantucket at 8 o’clock at night, he can’t drive home.  So, all that impacts our lives, because we have to change our schedule according to what he needs. 

I think our relationship, since the diagnosis, it’s all been a good thing, and we’re not down the road yet.  We’re not into the ugly part that’s going to be—I don't know what that will bring, but our relationship is good.  We’re fighting the same path.  We have the same goals.  We want our kids to be well and with us on this journey.

Communicating with Greg—he’s a very strong personality.  He always has been.  So, he’s very opinionated.  So, I’ve found that there’s certain subjects, you really have to bring it up at a time.  It can’t be at sundown.  That’s not the time to talk to him about finances or selling the house or whatever, anything that’s going to exasperate him.  You really have to pick your time, and the nighttime is the worst.  The whole sundowning phenomenon is real, and it’s very frustrating for Alzheimer’s patients.

When Greg gets upset, and he will be sitting here on his laptop, and he just will burst out, and he’s angry, and he’s confused, and he will verbalize that say I’m so confused, I’m so confused, and what’s difficult is that I’m always saying can I help you, what do you need help with, and that makes him angrier, say I don’t need your help, I don’t need your help, and I think that’s the frustration of knowing he can’t fix it, and I think the biggest thing, we just try to keep it calm and try to be more patient, and not get upset when he’s repeated things a dozen times, and it’s all about patience and sitting back and realizing what it is.

Any kind of advice in living with a person with Alzheimer’s is it’s a patience issue.  It’s let them scream and get upset and frustrated if that’s what they need. A lot of times when Greg does have his outbursts here and Conor might be in another room, sometimes I just walk in to Conor and just look.  I’ll just say what is he so upset about.  So, Conor, you’re just shaking, because you just can’t figure out, but it’s nice that he’s still here that I can run in and say he’s driving me crazy, I don't know what to do.  So, I don't know there’s not a lot of—because everybody’s different.  Everybody’s different.  Some people don’t have outbursts.  Some people do.

The single hardest thing about having a person with Alzheimer’s is the future, because we really, we just go day to day.  I don’t know what’s going to change in his personality tomorrow.  I don't know what financial issue is going to come up in a week.  The hardest part is not knowing what the future brings.

It’s very hard to have been married to somebody for 40 years, and they won’t remember that we went to Hawaii one time, that we got engaged in Maine. Those things are very hard.  So, I think it’s the future that’s hard.  Right now, things are good, but it’s what’s ahead.

Because I’m still working, and my life tends to be I work, I come home, I do whatever has to be done, I find that I’m pretty tied up in that right now, and it’s probably a blessing, because it doesn’t make me think about the future that much.  My future right now is selling this house, getting Greg into a situation where he is familiar with his surroundings and it’s smaller, it’s more manageable.  That’s my future right now.  Am I in denial? A little bit that the future will bring about what we all dread the most.

Comments

Comments (22)
Suzi Silver
June 20th, 2021 5:13am

I have just begun this journey into the unknown. I am m.j so frightened.

Virginia
June 20th, 2021 5:13am

I can't do this. It's Christmas eve and I'm sitting in the living room alone. He's in bed. He went to bed at 7 pm and was angry because I wasn't ready to go to bed too. He was angry because the lights were still on. He refused to take his night meds. Almost violently refused. Mostly he's angry because he is hurting and confused. But I'm hurting and confused too. In a different way. Next July we will celebrate our 60th anniversary. If there's anything li eft to celebrate. I can't do this. But I will. One day at a time.

EllieO
June 20th, 2021 5:13am

Thank you for your honesty. You have a sad and heavy burden. Do what us best for you as well so you can be a wife and not just a caregiver in a difficult, angry and frustrating situation

Suzy
June 20th, 2021 5:13am

Helpful

Dorothy Sluss
June 20th, 2021 5:13am

Please sit down with a financial advisor and figure out what you need to do to protect assets for you and your son. You also need to see a lawyer and get power of attorney, POA, over your husband and you need to get a will in place. You never k ow what family members will try to do, sometimes with the best of attentions for the LO just not for you or your child. I would look into assistance in home rather than give up your home as it is so expensive it can destroy a families finances. My husband was diagnosed twelve years ago and I have kept him in the home. I still sleep in the same bed. He does not k ow me, but I k ow him and I think it helps calm him down.

Cynthia
June 20th, 2021 5:13am

Very well put. I totally relate. I don’t work but spend i day a week on my medical issues and one night a month at my daughters with the grandkids. Everything is set up for him food, pills etc but he will often skip it. He likes the time.

Diana
June 20th, 2021 5:13am

I can so relate to many of you sharing your experiences. My journey with my husband is a scary thing. He was confirmed with alzheimers but it is hard to help him because he is always angry and he blames me for everything when he doesn't remember things.
My husband is also a smoker which has been a problem for a long time due to my COPD.
2 weeks ago I went to the hair salon when I received a call that our house was on fire. Fortunately my husband was safe and my daughter happened to stop by and got our new puppy out of the house.
So, we have been to a hotel for two weeks and now are in an apartment. Obviously he is having problems with all the changes.

The biggest problem I have is the anger I feel. We have lost our home and I am so frustrated dealing with additional responsibilities since the fire. So, It is no longer safe to leave him alone,

I have had great support regarding the fire.

People that talk to him say he doesn't look or sound like he has a problem.

How can I get support when he doesn't acknowledge he has a problem?

Thanks for letting me share my frustration!
Diana

Ev
June 20th, 2021 5:13am

⚡️SHARING IMPACTFUL ALZ LESSONS LEARNED (a 3 minute read)⚡️

Begin forwarded messages:

I sent an old boss and friend I hadn’t communicated with for 20+ years, the following message in a note ⤵️

Hi....I hope all is well with you and yours.

I’ve been texting Chicago friends and forwarding the contents of this note attempting to help others deal with ALZ after clearing its contents with the doctor who has been running FDA trials my wife has been participating in since 2013 when she was diagnosed.

We are incredibly lucky to have a man of our ALZ doctor’s caliber help us on my wife and my uncharted and challenging journey. Drawing upon his wisdom and 25+ years of experience has proven beyond invaluable. From him, I have learned I must attempt to choose the least stressful alternative whenever a short term choice needs to be made because stress irreversibly kills brain cells. It’s the prudent thing to do. And I will not deviate. Ever.

BOTTOM LINE, I try to change the topic when I notice my wife getting upset, tense, or increasingly confused.

Please pass this note about ALZ on. If I had the advice found below when my wife was diagnosed with ALZ 5+ years ago, our lives would have been much easier. But I didn’t. And I was unaware of these key lessons learned by other care partners before me and shared below.

My wife’s ALZ doctor suggested I send this note to a very select group of people so they will understand how someone with ALZ thinks and a few other critical facts. At average reading speeds, it should take about 3 minutes to finish.

My wife is my life and all I want is for her is to enjoy hers as best she can with ALZ. I learned some very helpful facts during our last appointment with our ALZ doc, an ALZ FDA savant. I want to share some lessons learned with you now.

My wife is a private person. At our ALZ doctor’s suggestion, I will only share things about my wife’s ALZ when I strongly feel specific people need to know specific things to protect her and/or make her life easier. Please honor her wish to be private. It will stress her if you don’t.

My wife and my goal is to do everything we can and want to do and ENJOY life the best we can each and every day.

She has ALZ. It is what it is. To live our lives as normally as possible, it’s essential we make you aware of a few things about ALZ. Some critical factors that impact the thought process of people with ALZ follow:

If I could only share one thing our ALZ doc told us during our 45 minute face-to-face it would be: The more people that are showing my wife love the more it’s going to help her as long as it doesn’t introduce stress in any capacity. He reiterated that negative emotions and confusion cause stress. Please try to change the topic if you notice my wife getting upset, tense, or increasingly confused.

Fundamentally, there are a few other things it is essential for you to know.

1) There always has been/will be a high probability of conflict and stress when those with ALZ feel disrespected for ANY reason including being interrupted or feeling talked down to.

2) When anybody with ALZ becomes upset, their ability to remember and reason temporarily declines more. In itself, that’s stressful.

3) My wife doesn’t like to be reminded she has ALZ despite the fact she occasionally tells people she has it. Hard to understand but a fact. It stresses her.

4) When anyone is tired or not feeling well, their ability to function and reason also temporarily worsens.

When something comes up that stresses a loved one, try to change the topic. 🔴 FULL STOP 🛑 Choose the less stressful alternative action.

Said another way, whenever there is an alternative or topic that will cause additional stress, you simply don’t talk about it or do it.

I would greatly appreciate your passing these thoughts on to friends and colleagues who will benefit from having the lessons learned and shared above.

Warm regards,

Ev

================

B.E.
June 20th, 2021 5:13am

I am taking care of my wife with altizmers. I relate, now everything is on me.I get so frustrated. My daughter says I need someone to come in and help , she would but she upsets her mom for some reason. I guess it would give me a break. I guess some of the frustration is I hate that this happened. I like seeing about other people dealing with this. Seems to let me know what others are experiencing.

OPEN_Administrator
June 20th, 2021 5:13am

Thank you all for sharing your stories. Talking about your experiences with Alzheimer's disease helps others know that they are not alone.

We know that it can be difficult to see a friend or family member suffering from Alzheimer’s. Talk to your support system and your loved one's doctor about how to handle difficult moments.

Biloxibaby
June 20th, 2021 5:13am

My husband is so unpredictable won’t eat then wants another sandwich Won’t let me rest Can’t stand for me to get out of his sight. Walks a lot after we try to go to bed. Turns on all the lights. Married 65years the love of my life. Breaks my heart to see him confused and frightened. Hope I can keep him home. It’s the most trying time ever. Have some great friends and family. They are very supportive.

Ps
June 20th, 2021 5:13am

I care for my wife who has Alzheimer’s since 2012. Some days she doesn’t have an idea about the situation but other times she’s okay. Sleeping more, eating less. No being with friends due to Covid is a problem. We eat out but don’t do much else due the situation. I’m getting really tired. I had other caregivers but with Covid the older ones withdrew. Don’t where to go next. If she’s in a facility I wouldn’t be able to visit. Not good.

C.A.P.
June 20th, 2021 5:13am

I am 65 and my husband is 80. My husband has aged very quickly in the last couple of years. The first time I noticed something was wrong was when he would go to the bank or Dr. appointment and get lost!! I would get a phone call from someone who would say “We have your husband here and he doesn’t know how to get home.” He would have a Dr. appointment and call me saying he was lost after driving around for 45 minutes. I would call and cancel the appointment for him. Finally, I went with him to his regular doctor and told him about my husband getting lost and he told me that he should not drive anymore!! Now I am driving him everywhere and doing all the grocery shopping since the pandemic started.

Mary
June 20th, 2021 5:13am

I am the caregiver for my husband of 54 years. He has vascular dementia, diagnosed in 2017. He also has had a stroke in 2018. In reading all of the above comments, I see bits of his behavior in many of them. I am not able to leave him alone and I have no family near us. That is very difficult. He can’t be apart from me....becomes frightened. Two things that are helping us now.......sense of humor —we laugh at things that someone else might not think is funny! The second thing that has been very helpful hippo-therapy! He “rides” a horse once a week for an hour and it has been the best therapy. Of course, I’ve terrified of the future but try to live each day as is! Sometimes I question if I have the strength and patience to go on, but there’s no other choice.

Lyn
June 20th, 2021 5:13am

I read your husbands book, but so glad to hear from you. I have been married for 48 years and it is so stressful to go through the anger. My husband has refused a diagnosis, and any medication or medical care.

Nancy
June 20th, 2021 5:13am

I’m 65 and my husband is 75. We had noticed his memory failing for a couple years, but he continued to work. He lost his job due to pandemic and since then has declined quickly. Took our dogs for a ride in the car and got lost and got pulled over for speeding in another county. His license was suspended as the officer noted his confusion and called me with phone number in husbands wallet (he didn’t know his own phone number). I’m still working ( financially necessary) he has no interest in doing anything. He sits in front of TV all day and sleeps off and on. Often he confuses day and night. Unable to accurately tell me month, day or year. Scared of our future, taking one day at a time😢

Map
June 20th, 2021 5:13am

My husband (82 yrs. old) has had dementia for 3 years now. He won’t acknowledge there’s anything wrong but age. He has insisted this is not his home and he wants to go to his other house. But I don’t know how to make him understand this is his house. This was only at night but now it he day. Any suggestions?

Wanda
June 20th, 2021 5:13am

Thank you for sharing please don’t feel bad for anything you have to do to make it easier in you all! My husband was diagnosed with Alzheimer’s 2 years ago and after taking care of him and everything else I sold moved to a condo on one level best thing I ever did! It was a hard move (exhausting) but a good one. He adapted well. This is a wicked disease and I’m finding not a lot of help but we all are going to make it thru. Trust God everyday for your strength he won’t let you down. 🙏

Ruth C
June 20th, 2021 5:13am

Your story rings to exactly my life. We are not married so I don't have a lot of options as a spouse does. He yells at me because he thinks I am controlling him. He just retired from truck driving because of some severe violations. The worst is he drinks excessively. He doesn't realize how much he drinks. He still drives the car so goes on "errands" daily for 2/4 hours and goes to a bar or buys alcohol and puts it in water bottles so he believes we don't know.
I work fi home and at end of my rope.

Deb E Lee
June 20th, 2021 5:13am

Virginia, I can relate; although Mike & I have only been married 10 years so far. We were both married before, but I was single almost 20 years before I met Mike & remarried. We had such great plans for the future, traveling & visiting family & friends that had moved out of state, etc. We were only into our 5th year of marriage when Mike started doing poorer at his job & earning less money & mismanaging money. In 2015 I had to retire from my job as a Respiratory Therapist due to Rheumatoid Arthritis, so there was even less money coming in for bills, food, my meds & not much else. By the time I was able too get Mike out of denial & to a Neurologist for testing, he had already lost 3 jobs. He had to retire & be on SS like me at 65, & we had depleted our savings.
But God is good & faithful ~ I was able to do a cash-out refinance on our house to pay off some high interest bills, lower our monthly payment a little, & put a few hundred in savings ~ every little bit helps!
But at times I still get anxious about the future & have to read some of God’s promises & pray daily❣️🙏🏼🕊

Margie
June 20th, 2021 5:13am

My husband was diagnosed a year ago - but is in denial. However, his personality has changed, he is often confused, and sometimes comes up with crazy ideas. I find that if I live in the moment, everything's ok, but when I think about the future (I took care of my grandmother & my mother-in-law, so I know what's ahead). I get really scared. It's then that I need to focus my thoughts on God and His Son Jesus, and remember the I don't have to go through this (again!) alone, everything settles down and falls into place.

josie
June 20th, 2021 5:13am

We are just about where the author of this post is. I am 85 and my husband is 87. I am responsible for everything. There is a lot of interference from his sisters who are in denial and intrusive. I am managing ok but worry about the future.

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