It is still early in the Alzheimer’s process for my husband and I sometimes forget that he is ill and can’t help his forgetfulness. When he leaves packages of English muffins under a bedroom desk, can’t recall his grandkids’ names or has word-finding problems I get annoyed and snippy. I realize I have depended on him for almost 50 years of marriage and now I must pay the bills, make all the appointments, do all the shopping, do the taxes. If he goes to the grocery store for blueberries he may come back with grapes and I get annoyed and frustrated. When he says he just took a shower and he didn’t, it becomes an argument. When he repeats his stories I also get annoyed. We really never fought before but now we do over stupid things like “Where did you put the mail?” I realize I get anxious about important mail being misplaced and need to work on a different process but he wants to do the things he always did and if I do them, he feels insulted saying things like “I’m not an idiot”! I have very dear friends for more than 50 years and they would have been helpful to me if we were ever able to get together. Since COVID, we haven’t been able to meet and we all have more medical issues to deal with. Zoom is horrible. Since COVID, we have not been able to go to a gym or our Alzheimer’s’ support groups. My husband was very social and friendly and really misses going out but enjoys frequent trips to see the grandkids. He is friendly, loving, and extremely positive and most people don’t see the Alzheimer’s symptoms. I am reminded all the time of a scene from the musical “Man of La Mancha” when Don Quixote is lying on his bed dying and Dulcina is begging him “Try to remember…” I realize that I say this to my husband and feel I am losing him. I want the man he used to be back! I want to stop “yelling” at him (although it’s not really yelling but nasty criticism). I dread the progress of this disease which adds to more anxiety and snappiness. Reading the stories here makes me feel that I have nothing to complain about. I want my kinder self back. I want more patience. I started on a very low dose of anti-anxiety medication but it hasn’t really helped. I was a hospice volunteer and had plenty of kindness for others but seem to have lost it for my husband-probably because I no longer have “the wind beneath my wings”. If I say this to him, he just feels bad but who can I tell? Except whoever is reading this. Thank you.
I will take the mail problem first. I had to deal with this as well.
I would go get the mail and remove anything that was important and I would leave the junk mail. (I would even bring junk mail to the mailbox in case there was no mail for him to get out of the box. Otherwise he would want to keep going back.)
If he goes for Blueberries and comes back with grapes be grateful because in a very short time you are going to have to deal with taking the keys away from him. (I am not going to get into that now but it is something that you need to think about seriously)
If he says he took a shower and he didn't.....don't stress about it. I was surprised when I found out when my Husband was in rehab that the State only requires a shower 2 times a week. (or bath) As long as he is able to keep himself clean after toileting I would not worry about a missed shower. Now refusing to shower is a whole 'nuther thing.
You will learn "pick your battles" with a lot of things. Like the saying..."Don't sweat the small stuff" and you realize a lot of day to day stuff is the small stuff.
You might want to look into an Adult Day Care program in your area. It would give you a break and he will have something else to do a few days a week,
You mention in your profile you have LTC insurance you might want to start looking into what would be the point when you can start to use the benefits that you have been paying for.
Also if your husband is a Veteran please check with the local Veterans Assistance Commission and let them help you determine if he qualifies for any services through the VA
Your life is changing, and he will never get better, only worse, so the sooner you can come to grips with that realization, the better off you will be. You will also come to learn that your husband will mirror your moods and attitudes, so it really is important that you try and keep them as positive as possible. You can do what one of the ladies in my caregivers support group does, and that is when she gets overwhelmed with things or upset with her husband, she will go out in her garage, and rant and rave, using what she calls trash talk(which is her words for swearing or cussing)and when she's done, she comes back in the house, with a smile on her face(though it may be fake)and continues on being her sweet self. She swears that that works wonders for her, so might be worth a try.
Also it sounds like it's coming to the point where your husband doesn't need to be driving any more, as his confusion could really be devastating behind the wheel of a car, so please don't wait until something really bad happens before his keys are taken away. You can always blame his keys being taken away on his doctor, and that way he can be mad at him/her instead of you.
It's a lot I know, and it seems like you have been quite dependent on your husband over the years for many things, but it's now time that you step up and learn as much as you can about what needs to be done around your home, with your finances etc.
It is also very important that you educate yourself about Alzheimer's/dementia, so you can better understand what he is and will be going through. The book The 36 Hour Day is a great starting point, along with watching some videos on YouTube by Teepa Snow. She is a great educator on the disease.
I think once you are more educated about the disease, and have a better understanding of it, it will help you better accept what the future holds for you and your husband. Seeking out a local caregivers support group would be helpful too. You can Google to see if you have one in your area. Most are still meeting on Zoom right now, and I know you said you don't like Zoom, but I will tell you, that my local caregivers support group saved my life when I was at my wits end while caring for my husband, and even though my husband has been dead for over a year now, I still get on it every week, to try and help others that are still in the trenches. So please, don't rule out Zoom for a support group, as you will find them to be very helpful, as you can share whatever you're going through with people who truly understand exactly what you're going through.
Also make sure that you're taking time away for yourself to do things that you enjoy, as that will help keep your attitude better as well. You matter too, don't forget that.
And last but not least, don't be afraid to ask for help, or to hire help as you need it. You are only one person, and there will come a point where you will realize that you can't do it all yourself. And that's ok, because like I said in my first sentence, you're only human.
I wish you and your husband the very best. God bless you both.
Some groups are meeting again in person - see if you can find a meeting in your area where you can share with others in your position. If there is adult day care in the area have hubby attend and make new friends.
While you can take breaks from your husband - go for walks. When a snippy response comes to mind take a deep breath before answering - it's easier said than done - I know I'm the Queen of sarcasm and sometimes it comes out of my mouth before I think of how it is going to be received.
Pick your battles - as long as he bathes once or twice a week let it go. If he comes home with grapes instead of blueberries, let it go. Save the arguments for the important things in life - his safety.
Plan ahead for both of your needs - you don't want to wait for the last moment. My biggest issue with my father was that he drove way past the time he should have been driving. I worried he'd cause, be a victim of an auto accident - or be on TV as a silver alert because he was heading to the store and ended up several states away. I asked and asked him over a couple of years to stop driving - he'd say I nagged him until he finally gave in. There was no way mom was tackling him no longer driving and I couldn't blame her.
Just start thinking ahead so you don't have to make a decision at the last minute.
Unfortunately, you have started a long journey and you will need to accept what is happening. Find ways to destress so you can provide gentler, kinder responses. My prayers that you and your husband will be blessed with peace and grace as you both take this journey together.
I think the best thing you can do is stop being so hard on yourself, number 1. Number 2, don't minimize your own suffering because 'others have it worse than you.' My back hurts like the dickens which isn't feeling any less painful because the next door neighbor had her hip replaced. My pain is mine; yours is yours, and they're equally painful, regardless of comparisons.
Find some friends who are in the same boat as you are; who have husbands suffering from one of the dementias. You will NEVER find a better source of empathy and compassion than another woman going thru the same issue as you are. Let THAT be your shoulder to cry on and complain to rather than the man going through the issues that are causing you grief. If you vent to him, he will only feel badly that he's no longer able to be 'the wind beneath your wings.' I've made 2 good friends that are in the exact same situation as I'm in with a very difficult mother suffering from dementia. We talk daily and unload on one another and compare notes, too, and it's more helpful than therapy, drugs, or anything else on earth. I actually 'met' them here on AgingCare and we now talk outside of this website.
My own husband is having serious health issues the past year and a half, and scheduled for a liver transplant in February 1000 miles away from where we live. I can't really vent to him about my fears b/c he will feel badly that he's putting me thru this stress and that I've been and will continue to be his caregiver throughout the ordeal(s) and that he's no longer 'large and in charge', and it all falls on me. It kind of irritates me, too, to be honest. But in the end, HE is the one suffering the brunt of the pain from these various surgeries, so me doing my part is fair, I think. If I need extra help, I'll hire someone. I just rehired a cleaning gal I'd used a few years ago b/c it's a bit too much for me (with a bad back) to do heavy cleaning around here (and DH is a slob) so that's a concession I've made.
What concessions can YOU make to help out a bit? If he leaves English muffins under the desk and you know that, make it a point to look under the desk every day before they get moldy. If he forgets the grands names, leave Post It notes on the fridge with their names on them for his easy reference. Definitely don't send him to the store alone for anything! Go with him and shop together or expect him to come home with the wrong items (as most men do, even w/o memory issues).
You can't expect anti anxiety meds to give you more patience; they can only help with anxiety related symptoms. Patience comes from letting go of expectations, I think, which is a bit harder to do than we realize. If I expect my husband to stop being a slob, I will be bitterly disappointed and irritated on a daily basis. If I accept the fact that he's a slob and expect and accept that I will have to pick up after him, then my patience for his slobbishness expands. He has other good attributes that make up for his slob-like behavior, so I'm able (most times) to forgive that flaw in him, if that makes sense. If you work on accepting that your DH will forget XY&Z and make plans for how to side-step it, then you may be able to feel less annoyed by it in general.
Wishing you the best of luck with a difficult situation. Sending you a hug & a prayer for peace.
And to have had a marriage for almost 50 years with a husband who you said is still friendly, loving, and extremely positive - I hope that eases how you feel - it's a lot to be grateful for...and unfortunately this new road for your husband is a scary one, but I hope you find strength, clarity, peace of mind and support along the way.
I found I was getting irritated when I cared for my husband - who doesn't have dementia issues - for 6 weeks after his cancer surgery. He came home the day after surgery to avoid COVID exposure. I am an RN and I was on the clock 24/7 for about 2 weeks. The remainder of the 6 weeks, I was able to actually get enough sleep. He was tired - understandably - and so was I. He had some small complications which added a lot more phone calls to the surgeon, the insurance company, outpatient imaging centers, the pharmacy... while managing the problems. So I truly understand. I was thankful when he was well enough for me to head out into the garden to expend a little of my "cabin fever" on weeds.
as it is for you … it’s a million times worse for him. He knows he’s not
right … he forgets .. is confused…. And very frightened!!!
so learn how to pay bills shop and make decisions!! Get help with the grunt work … psychologist and work on empathy and understanding… as you say .. he took good care of you over 50 years !!!
as difficult as it is for you … it’s a lot worse for him !!
one day you’ll wish he could go store and come back with wrong item !!!
The 39 Hour Day book is good, but a bit overwhelming at first. I'd suggest you try when Reasoning No Longer Works, by Angel Smits fIrst. It's written with a story line of a man with a wife with Alzheimer's, but the story is the same for all of us.
The idea of just going with the flow is good, too, and going to the garage to rant, and crying your eyes out into a pillow. You have a lot of adjusting to do, a lot. You can do this, it's a hard unforgiving unfair thing, but whoever said life was fair.
I also think it is particularly hard on spouses, I have been married 55 years to this man I now do not know very well. Spouses do have the advantage though of knowing what their patient used to be, remember that and use it to your advantage. My husband now often thinks of me as his mother. She was bossy, nosy, and demanding. This is what my normally accommodating self has become. I often hate what I have to do or say to or for him, but it's for his own good. This is something you have to remind yourself constantly.
I was was the one who took my husband's keys away from him. The thought of him having to stand in front of a judge because of an accident, or something worse, was enough to make me stand in front of the car and say "no way, not today, not ever again" It was the cruelest thing I have had to do so far. My guy did all the driving, all the time and did so since he was about 14 years old. He was not having it and there were many loud arguments. I hid his keys and kept my own in my pocket, even at night in the pocket of my robe! I lived thru that because I love him. That is the whole reason for this, even when you hate him for this.
About having to to do everything, you will learn and be stronger for it. You will find that people who come to work for you, lawn mowing, plumbing, etc. will help more than you can imagine.
You are only human and so many people will tell you to remember that he can't help it. Well, you can't help it either, go ahead and yell your head off sometimes! Try your best to keep a sense of humor and by all means get yourself a journal. Even if it's just a grocery store notebook, write in it. Write everything you love, everything you hate. I don't hold back hoping someday my kids and grandkids will know just how this went. I keep a lot of it from them as they live too far away to help, or to understand.
Hang in there, girl, and just do the best you can. If somebody tries to tell you they could do better, hand over the house keys and say "Have at it! Call me at the mall when you're done, I'll probably only have just gotten to the parking lot!" 😂 Hold your head up and do what's best for both of you. You'll have some happy good memories, treasure them in your heart for the day you have a battle that looks a hill to die on!
God bless!