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With all respect to the two of you - Please stop. The responses on this thread are from people who are clearly at the ends of their ropes from dementia caregiving. They've already heard all the bull**** advice about taking their LO to a geriatric psychiatrist (though I see the benefit of this when the person will forget what the doctor tells them five minutes later), and how to have different responses when the remote goes missing or when the supper's in the bath tub. Please. This is no kind of practical advice that a caregiver can actually benefit from. It's word salad.
Hired homecare. Adult Daycare. Family Respite (if possible). No one can deal with dementia 24/7 without losing it at some point. Especially when it's another elderly person who's the caregiver.
Sometimes there has to be placement in managed care too.
What so many caregivers need help dealing with is the guilt of doing what's best for everyone including themselves.
Put a chain on the remote. No explanation, just do it.
Also, I got a senior-friendly landline table phone so I can reach her from outside or when away from home. (She can't differentiate a cellphone from a tv remote, but recognizes what the table phone is.) A big sign saying "In emergency, dial 911" taped to the phone has given us both peace of mind that if something happens to me she can get help. (When asked, she says one should dial "0" in an emergency, so the sign is mandatory.) I considered an emergency button necklace, but am sure it would be a disaster...she'd be pressing it every day out of curiosity, just as she turns off the noisy washer and dryer to be helpful, lol.
I miss my mom, I miss her shoulder to cry on. Especially ironic since my biggest woe is what's happening to her. Her personality's the same sometimes but she's no longer fully adult. Her brain is literally smaller and will never again work like it used to, and it gets worse every day.
This is my first post here, hope it helps someone as much as everyone else's shares have helped me.
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)))
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.
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.
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 a 24/7 caregiver is exhausting, debilitating and, carries great risk and safety concerns for both you the caregiver as well as the patient.
If he is a veteran, immediately seek VA assistance; resources when can in some cases be substantial.
Also some agencies on aging and Alzheimer/ Dementia groups offer a grant program to assist with caregiving in home care .
Speak with his PCP also and have him reassessed for level of care needs. PCP should also be able to give some referrals for potential help in or out of the home.
In considering everything, speak with the family about what would happen if you , God forbid, get I'll or injured and cannot provide the level of care you presently give with your husband.
Get POA and other documents in place for you both if not already completed.
You must practice self care to endure the road ahead. One way is to quickly start this process toward getting help .
My father had dementia
My companion has Parkinson's
Both conditions will test you to your limits.
I understand you can't escape, but in order for you to manage you really have to.
Otherwise you will end up becoming aggressive and miserable out of pure frustration. Go for a long walk, sod the consequences.
Shut yourself in a bedroom and play music loud. Escape from your stress before you go insane
Force yourself. Start putting YOU first at all times.
Put him in a room where he is not at risk and shut the door....if he didn't have you he would be in care.