My husband is still considered early stage but he misplaces just about everything. I have tiles (locator device) on wallet, keys, remote for TV but he misplaces things like, ”Where did you put the dinner I just gave you?” It could be anywhere in the house. Where did you put your medications? (Which I give him in a daily dose pack and he loses within minutes). Searching is my life. Spatula, meat pounder, hammer, dishes, shoes, coat, detergent —English muffins under a desk. I am going mad and end up yelling at him to remember what he obviously can’t remember. He wants to be helpful but I think he also gets distracted when handling items. How can I stay calm and realize this is the disease and as he says “It’s not the end of the world”. People here advise us to “get out” or “get help”. You can see that I don’t need help for sporadic times when the frying pan is in the bedroom. I can’t get out because I don’t want to leave him alone when he can get “into trouble”. I am a senior and all of my friends have their own troubles with COPD, blindness, cancer in spouses etc. Our children have jobs, live at a distance and have small children. I can’t call them on the spur of the moment to look for their Dad’s dinner! Day Care could be an option but most of the people there have more advanced disease and it is expensive. I just need to find a way to calm down when these things happen.
These sound like such simple things, and they are, and could save you a lot of undue stress.
You are the one who is going to have to learn to do things differently and quit expecting your husband to be the same as he always was, as he can no longer be. And he can't help it. His brain is now broken and it will never get better, only worse.
You're going to have to keep a much closer eye on him going forward and you must just except that that is now your "new normal."
Perhaps if you start educating yourself more about the disease of dementia, it will give you the tools you will need going forward. The book The 36 Hour Day by Nancy L. Mace and Peter V. Rabins is a great tool along with videos on YouTube from Teepa Snow, a world renowned dementia expert. She also has some great books that she's written on it.
Also look to see if your city offers a caregivers support group that you can attend in person or on Zoom as that will help you more than anything. Being able to share with folks going through similar things is priceless and can save your life.
I know that my support group saved my life while I was caring for my husband with vascular dementia.
This is and will continue to be a hard journey that you're on, so please make sure you're taking time away and doing things that you enjoy as that will help with your stress levels as well.
And remember...it's the disease, not your husband. He can no longer help it, and it's going to require much more patience and understanding on your part.
And if all else fails you can do what a lady in my support group did while caring for her mother. She would go out on her back porch and scream at the top of her lungs. She said that after that she felt much better and could continue on.
But I'm here to tell you that you can do this. Will it be hard? That would be a strong YES! It will be the hardest job you will ever do, but you will come out a much stronger and better person when it is all said and done.
God bless you both.
I can find things because I keep calm and don't slam doors and drawers and assume that someone has stolen something b/c it's 'lost'.
I think we're only a few years away from him being able to drive and travel without me.
I don't have any real advice. Just empathy. I do try to keep all horizontal surfaces as clear of stuff as I can. That helps. I pick up after him all day long, every day b/c he is always thinking of other stuff. When I find something I know he's thinking is 'lost' I put it on his nightstand. I guess we can't keep one step ahead of these guys, much as we try.
I think I am going get a bunch of 'tiles' and attach them to all the things he routinely loses. Hopefully, that will help.
We can't even have a sense of humor about this b/c it is not funny in any way, shape or form.
(((HUGS)))
Plus downsize what is in the house helps. I donated a lot of knick-knacks, extra sofa pillows, went through desk drawers which can get crammed with stuff, kitchen drawers and cabinets. It's just gives a wider view of things :)
I predict the younger generation will have this "distraction" because they are so glued to the cellphone. You hand them something to put away, and heaven knows where it will finally be.
The key for you, I think, is to figure out to shrink down DH's world to where it's manageable for BOTH of you. Daycare is a great idea and whether it's expensive or not, it's a lot cheaper than full time care in Memory Care Assisted Living. Your DH is further along than you realize, so saying that daycare is for 'more advanced disease' isn't justified; give it a try and see what happens. You can't go on like this indefinitely, right? Either daycare or hire someone to come in to give you respite, and that's expensive.........one way or another, dementia care costs a lot of money.
As far as 'how do you calm down?' during your frustrated times, I think there's no easy answer to that EXCEPT to find respite. Get him into daycare or hire caregivers to come into the home. Get OUT of your house & have lunch with friends or get a mani/pedi and go shopping. That's how you regroup and regain some composure: by performing self care and removing yourself from the chaos that's going on at home.
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
Wishing you the best of luck with a very difficult situation.
I do think that you have a realistic point of view which is more than I feel like I had. You aren’t in denial of a diagnosis. You see the confusion.
My mother wasn’t diagnosed with mild dementia until she was near the end of her life. I believe that it progressed faster than we expected as she aged. At one point she was trying to escape out of the house at night into the streets.
I am not an expert by any means when it comes to dementia or Alzheimer’s. Posters such as Lea can share a plethora of information on the topic.
I can look back now and see that my mother most likely dealt with more confusion than I knew about.
It isn’t always easy for caregivers to see the entire picture. Maybe it’s because we wish to see the best and are sometimes in denial of reality.
The best advice that I received is to take breaks from caregiving. I wish that I had listened more to that wise advice.
It’s difficult to find humor when we are running on fumes. As far as losing our temper goes, every caregiver has dealt with being frustrated. It’s completely normal.
I hope that you will be able to find ways to refuel on a regular basis. It’s much easier than running yourself ragged until you drop, falling apart and then picking up the pieces and struggling to move forward.
Think of him as a toddler that your constantly needing to find ways to keep save. You may need to put that toothpaste on his brush and hand it to him like I did with my Mom.
Look at your husband as if he were a child. You can't expect them to do the things they used to do. Their brain is wearing out.
What about a one day a week morning respite program? Even just one morning a week where you get out and do something fun for yourself.
You don't want your life to be just the 4 walls and doctor's appointments.
The pills you have to monitor and sit down and watch them ingest them. Don't leave it to chance. I log in morning and evening pills on a calendar. I have a locked box for morning and evening.
As you know there are gadgets out there for everything. Sounds like you need to get out.
Sounds like hubby needs more supervision--ask your husband's primary care doc for home services. Call on the Church people, local neighborhood respite programs and I have always found the Nurse Case Manager's in doctor's office to be extremely helpful.
You don't want your husband to get hurt or turn the oven on. Don't argue with him or correct him. It's a waste of time and not good for either of you.
Just calmly hold their, say come and sit and take a deep breath. But I would call on more services. You cannot do this alone.
I hope I was of some help to you. I know it's hard the longer it goes on but there are resources out there.
Don't get discouraged. Just step back and sing one day at a time Sweet Jesus!
You need to share this burden - like it or not - with some part time care. Someone to help you with household tasks and with your husband, someone to share the load with, someone to give you respite so you can get out a bit. As time goes on, your hubby's needs will increase - and starting to look around now for some help will prevent you from settling for just anyone in an emergency. In the meantime, can you invest in some wifi cameras in your home? Many are very inexpensive, easy to set up, and quite effective. You will be able to use your smartphone to monitor where he is and what he is doing or hiding. Sending you a virtual hug.
But, this seems to be more of a band aid and I question the time it would take to review film to re-trace his steps and see where he puts things ... if that is even caught on the camera.
I agree, this woman must get some in-home support for herself and her husband. Like it or not. There comes a time when we must do what we need to do or lose our minds.
Try to minimize your husband's opportunities for handling spatulas and English Muffins and frying pans, but when he does lose things, think of it as another anecdote in a "book" you can pretend you are writing about the Adventures of Caretaking. You can certainly say out loud anytime you need to, "I love you, dear, but you are driving me absolutely bonkers."
Visit tm.org
I will go and sit now.
Also, FOCUSING technique is incredible. I studied it for years and offered guided sessions (although a person can do themselves).
You have to do the same. Baby-proofing and dementia-proofing are pretty much the same thing. Your husband should not be able to access things like food, keys, and wallets on his own. Put the tv remote on a chain like hotels do. This way it can't get lost. Supervise him when it's meal time.
It's easy to reach the end of your rope quick with a person that has dementia. I totally understand. The best way to avoid losing it with him and lashing out, is to walk away when you need to. Tell him to leave you alone and go into the bathroom for a few minutes if you need to. During this time you ignore him.
Literally set a timer and give yourself five or ten minutes alone. You'll see. It will help.
Also try adult day care for him. I worked in a nice adult day care and the clients with advanced dementia and other issues are kept separate from the others. Many of the clients had it together pretty well and were there for socialization so they didn't have to be alone all day. We took them on outings, had movie days, all kinds of things. Check out a few adult day centers. I think you might be surprised.
Just know it can be up and down emotionally and don’t beat yourself up for being human.
careblazers.com has a lot of free content- immensely helpful and encouraging.
If am angry or snide, that’s what he does back to me. Still hard. But you get better results keeping calm.
Its so difficult to be patient all the time. You are human. Don’t be so hard on yourself.
A couple of things that helped me were starting a antidepressant and online caregiver support mtgs. I fought taking a med for this, but I was spiraling out of control. The only two emotions I had were anger and despair. We have no family or kids, it’s just us. It’s hard to be patient when asked the same thing over and over. It’s frustrating to spend half you time looking for stuff that shouldn’t have been misplaced at all. I get it.
The support mtgs have helped knowing I am not the only one who has these feelings. Also the group can be a source for ideas and problem solving, although with dementia, you never know what will come up.
I have started keeping such a close eye on my husband. If he goes in another room, I busy myself near there where I can see him. I try not to “interfere” with what he’s doing, (he gets belligerent) however if he places his glasses in a desk drawer and then asks me where they are, at least it saves me time because I saw where he put them. I know you can’t watch 24/7 but it has helped to keep an eye on him as much as possible.
If you go to Alz.org you should find links to support groups in your area. Since they are online, it doesn’t really have to be in your area anyway. Zoom mtgs are easy, and some people don’t have web cams, so they are just calling in. I had never done a zoom mtg before joining caregiver groups, it’s easy.
I understand about not needing much help, but still being at your wits end. That’s where we are too. My husband and I are pretty much joined at the hip and do everything and go everywhere together. That’ll work until he becomes incontinent or hostile. Then I’ll have to find home care to be with him (or daycare) so I can at least run errands.
The fact you posted here means you are reaching out. I hope you will try support groups. One other thought, you could put inexpensive security cams around the house to help keep an eye on things. Say you are in the living room and he goes into the bedroom, if you have a phone or tablet, you can see what he’s up to. Just a thought.
I am also familiar with that old “brush off” of ‘so what, who cares, what difference does it make’. So frustrating!
Yep. It’s the “all you show”. I complain I don’t have family to help, but like you said, sometimes they can’t help anyway, it’s not always practical. So it’s you and you alone. But really you aren’t alone…find an online group. Keep posting here too. We may not be much practical help, but we can lean on each other.
Also, for a quick bit, try stepping outside, getting some air. Put on some music. Go brush your hair or your teeth. Just something for you that easy. Watch a TikTok video that makes you smile…they are very short. Go wash your hands, eat a cookie or an apple. Just take a small break for yourself when you start getting angry. There’s always count to ten and then take some deep breaths. Those little things can buy you enough time so that you don’t snap at him. Also, can he do word search puzzles, sudokus, or will he read a bit? Something that will keep him occupied for a while? We have bird feeders and my husband like to watch those, however I try and get him to do different puzzles, word search etc. I try to get him to switch up things so he stays stimulated. He likes word puzzles, although they are getting increasingly difficult for him. Look at the Alz.org store and also Amazon, they have a lot of games puzzles for dementia patients. Also, does he like music? Would he sit and listen to music for an hour or half hour? Does he have hobbies or Tv shows he still can enjoy? Keeping him occupied frees you up a bit. I just recently reintroduced solitaire to my husband. He used to play on his computer, but that’s too hard for him now. I have to help him get the cards laid out correctly, but he can play. Good luck!
These have helped me tremendously transition in my mind from frustration to acceptance and understanding.
Getting a counsellor is vital to having a safe place to vent.
Best wishes,
I hope woman can get caregiver(s) to assist her. He can't lose things (as quickly) if others' eyes are watching him. Although I know this can get very costly. Hiring or finding volunteers in college nursing, social work, geriatric depts may help as they need either experience, a bit of $ or both.
Your LO has a brain disease, and can't help it. Do what you can to change the situation so as many things don't get lost, And be patient with yourself, too. We're only human.
Being angry is normal - it's the acting on it - the lashing out - that's the problem.
I pray a lot for compassion, empathy and patience.