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.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
In the videos, Jennifer Ghent-Fuller provides a lot of examples to help caregivers understand what people with dementia may be thinking about and what they may be perceiving. Thank you for posting that link, lealonnie1.
Kathleen, your temper is an indication that you aren't coping.
I'm not judging you, I actually admire the love you have for your husband and family, and your tenacity.
But, as someone who too has problems with her temper, I recognise that your boundaries have been overwhelmed. I know it's no big deal to find the dinner under the desk and the shoes on the table, once, maybe twice, but not all day, every day.
Yes your children are busy, but they need to know what's going on.
You do need help, even if someone comes over once a week, & you can go out for a few hours.
You cannot contain or manage this situation on your own.
That's what your temper is signifying.
Lucky you have one (a temper) because you're at least blowing steam.
Take care of yourself too, or there will be nothing left.
Ask for help, professional help, help from family and friends, do it even though it's hard. You need it.
Take care of yourself.
1. Oxygenate your brain by taking a couple deep breaths and counting to 10.
2. Staying sane in the moment is all about keeping perspective. You've outlined your goals very clearly in your paragraph here. Memorize them and recite them when you start to lose control. Like, "I could hire a part time care giver but I prefer to do this myself because real frustrations don't happen very often."
3. Humor. Get on You Tube in what little free time you have and watch funny videos. Nowadays Bloopers are called "Fails". There are funny bunnies, funny pet otters, funny cats, funny dogs, funny boxer dogs, dogs who speak by pushing training buttons, funny Husky dogs, funny golden retrievers, "oddly satsifying" videos of weird activities, virtual roller coaster rides that will put your heartbeat in your throat, comedians galore, etc... Most of these home and semi-professional videos are great fun, but every once in a while some are not so fun. If undesirable ones start to show up on the offerings, learn how to delete your history on your browser and on You Tube if undesirable traumatic videos start to creep in, like animal rescues. Each time you clear your histories, you are less likely to be offered those ones. Or, learn to look the other way from that part of the screen, or hang a piece of paper folded over that side of your screen. If you expand the You Tube with the little square in its lower right corner, it will take up most of the screen so you aren't offered other videos while watching. You can slow them down or speed them up with the little settings button there, looks like a rough white little wheel. You can pause and rewind. You can make one repeat automatically by right-clicking (or is it left-clicking?) and selecting "Loop". It's best to go straight into You Tube, but one alternative is to Google the humor your want and then select "Videos" on the Google screen itself, but for me, I'd rather go straight to You Tube where the settings offer me more control. In order to watch these videos, you do have to logon to Google but most people including you probably already do.
4. Soothe yourself. Say, "If I get through this, I am locking myself in the bathroom for a hot bath" or a cocoa, loving phone call, delivered pizza, fun Internet videos, time on the porch, dessert, half a drink, something romantic, warm honey tea, iced fizzy water, ask him for a foot rub, a nap, put your feet up, sit with a pillow behind your back, a warm neck wrap, an ice pack behind your back, a good show, etc... Or true crime - Mr. Ballen on You tube is very good at spook and each true story has a moral in it. You can see how many minutes they are before choosing which one. You can "click" on his channel to browse all of them. It can't cost that much to have a relative or trusted lady from the neighborhood (Nextdoor.com, free and usually verified people) come in to wash and brush out your hair or style or braid it. Diluted lemon oil removes the "smell" of hair (his too) and it's very good to have your damp hair combed in reverse from the crown & dried that way, a nice treat. Or ask a shop if they know a beautician who makes house calls.
5. It sounds like your husband provided well for your family. Memories really are a calming appreciation.
6. Not sure if you're interested in astrology, but different signs process frustration in different ways. If you are an Aries, you process life best through action, through "doing", even if it's nonsense or takes longer. That's just how they process. Websites can give you insight into how your sign "transforms" (that is the key word). To see how to best transform past frustration.
7. Getting enough rest.
8. Having your own safe area.
9. Say to yourself, "This won't last forever" in whatever way makes sense for your plan for the future.
The next time you can't cook or make an important arrangement because he lost the tool or messed up the arrangements, perhaps consider not rescuing him once in a while. When he questions why dinner is not made, just say the pan the recipe calls for is missing so you were unable to cook. If he balks, reply, "It's not the end of the world."
When a problem happens that's not the end of the world, appeal to his protective side. As in, "Oh you're right. It's not the end of the world. So many people have it so much worse. It's just that it seems to happen so often and I've been on my feet all day and I am so very tired. Would you mind locating it because I need to rest and it needs to be done before we both are so tired that we have to sleep tonight." And see how far you get with that.
I really think you could benefit from a caregiver from time to time. That way, you can have fun with him while she/he is there, instead of working so much for your husband. Plus, you could get respite outside the home.
Does it ever occur to you to play dumb? What would happen if you started acting like him, hiding his important things and forgetting to cook properly? Just to see his response? He may be keeping some abilities in reserve - it's amazing what a little kick in the tooty can do to improve a man's abilities around the house, dementia aside. I could be wrong, but I imagine if a woman has always picked up after a man, he simply might not realize.... Maybe he needs to dedicate 20 minutes a day to looking in each room, spotting things that are out of place and returning them to their proper spot. Also, I'm concerned, what would happen to him if you had a sick day? A real sick day? It's important to have Plan B in place before a crisis happens.
I have been a professional care giver for a few years. One way to increase control is to lock up important utensils/tools. It gives you control so you can perform without that kind of tedious, time-consuming disruption. I don't know if that will work for you, especially since frying pans can't be locked when in use or when in the dish washer. But having one or two locked cupboards or drawers with just the few tools you really truly need and use and value can give you more control over how long meals take to prepare and how much you have to run around finding pans or whatever....
Of course, in order to keep things locked up, you need clothes with pockets for holding keys, or be comfortable boat-clipping a key to your bra strap. As for small locking containers, Walmart sells $2 semi-opaque plastic lock tool boxes (kind of narrow) that can even go in the freezer. They allow for a pad lock. They are very sturdy so you could buy black ones for your husband for Christmas and semi-opaque ones for you in the kitchen, if that makes introducing this idea easier. He might admire their durability. They require a pad lock.
If I were you, I'd get online right now & order 40 matching locks all with the same key. I don't know why more people don't stock up on same-key lock sets. Buy way more than you think you will ever need. Don't ask me why; I don't know, I just know it's true. They are not that expensive and will save you from hours of playing the game "which key?" during the next few years as you start to lock up vital implements.
With items locked up, you'll need spare keys. You can lock spares in a lock box and hide the master or give the master to a neighbor, or you can pour water in a small screw-top plastic container and freeze it in such a way that no one would ever try to drink from it so they don't choke on the key.
Medicine is so important. It seems like the time has come when you need to monitor him swallowing each pill, right? Otherwise he could overdose or not get a dose, which eventually could result in you being blamed and forced separation (unless he's just on OTC or something not too important).
You might want to Google ways to control the things that get out of control. Like, if he dumps stuff under the desk, no more desk, just a tv tray for easy cleaning (I really don't know how you can bend and retrieve stuff under a desk. That sounds terribly arthritic to me.) Or, keep a towel under the desk. I would attach a string to the far end of it, parachute toss it in and let it settle, then wrap the extending string around a knob on the desk so that when he drops something, you can just pull the string to pull the towel out, let the item dump off, and then sweep it up and parachute the towel back in for next time. A long-handed (CLEAN) dust pan is great for retrieving items off the floor with a (CLEAN) broom. This might sound silly but it's just to get you thinking along the lines of how to adapt in order to reduce frustration. I am female & have found that we are not raised to think in these ways, but sometimes we have to learn to be more control-oriented.
If he doesn't like you locking things up, then get a really frilly sewing kit that's super feminine and put important implements in there. He can hardly balk if you are locking up your own girly stuff in case of burglary.
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.
my new neighbor has two young autistic children. Asked how she delt with the stress she said crystals and meditation. Lovely lady.
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 .
Give yourself some respite, at least weekly. You need to have a day when you can do for yourself and allow the stress to dissipate. Forgive yourself the temper flares when so frustrated and acknowledge that you're only human. You need self time; you just have to figure out the when, who and how of it.
On the meds: when you give him that packet, stay with him until the meds are swallowed. Sit with him while eating. try to place the usual kitchen utensils and such in a cupboard or drawer that he can't open or access. Or, buy 2 of some things if there are specific items that he's too often misplacing. Try to avert the chances of key items becoming misplaced, if at all possible.
You will, one day, have to wave the white flag and have your beloved placed in-care. You may wish to start the search and see what is available in your area. Admit that caring for him 24/7 will become more than any one person can do.
Give yourself some grace and forgiveness, just as you do for your husband.
There isn’t a person on this planet that hasn’t said or done something that they didn’t mean. Of course, there is regret afterwards. There is usually remorse too. Having remorse shows that we care.
No one is perfect. I am not fond of trying to achieve a perfectionist approach. Perfectionists do not tolerate any flaws of their own or others. Their behavior causes themselves and others misery. So don’t feel badly for not being perfect!
Caregiving is extremely frustrating. It’s normal for stress levels to rise. It’s exhausting. We don’t think clearly if we are overwhelmed and running on fumes.
When I went to see a therapist to learn coping skills while caregiving, the very first thing that he told me was to forgive myself for not being perfect. We all struggle. This is why I respected my therapist. He was a realist and gave practical advice.
I did learn breathing exercises and other things that were useful to me, but there is no magic wand to eliminate the heart wrenching circumstances that we face as caregivers.
So, I will say the same thing to you as my therapist said to me. Forgive yourself! Find what is useful and eliminate anything that doesn’t suit your needs.
Everyone has their own unique situation. Scenarios are frequently changing and it is a constant challenge.
One of the hardest parts of caregiving for me was the feeling of not knowing when it would ever end. I can get through anything as long as I know it’s temporary. It’s much tougher when we go through it with seemingly no end in sight after we have been doing it for years.
Caregiving is intensely difficult for many people to deal with. If others deal with it better than you, good for them. Please don’t berate yourself if you feel that you are having a tougher time than others.
Wishing you all the best as you learn to survive in the often thankless caregiving world.
it breaks my heart when hubby says he is just trying to help but actually he just made it worse. He knows he is a burden and cause me health harm and tells me thank you all the time for taking care of him. I can’t fix him I can’t fix me. So I walk outside and scream.
good thing my neighbors know what’s going on.
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.
I know this because I lose everything as a medium-grown-adult (49, lol) ENDLESSLY. I am not looking forward to my own old age :D
It has been worse since I had my mom move in (hospice for COPD, and ofc once you move a parent from the place they were for a bit you can suddenly find out they have a touch of dementia from one thing or another).
... she will forget I am me sometimes, but she remembers where I left that thing that was just in my hand. ;)
If there are other ways he is helpful - emotional support, etc, cuddling watching movies, whatever, ask those things of him instead.
It requires so much patience. I understand and good luck!
I would say he's more in the moderate stage. My mom waffles between mild and moderate, depending on the moment.
How to keep your temper in check? I used to do a lot of deep breathing! It helped for a moment. I put some music I like on in the background.
It's hard to imagine someone losing their dinner! You could think about changing the way things are being offered. Dinner at the table. Where you can watch him and no wandering off with his plate.
Pills - don't leave them with him. Have him sit at the kitchen table with you until he is done taking them. It'll be long and boring for you but better than having to wonder if he took the pills or where in the world he tucked them.
I would baby proof the house. Locks on drawers so he can't get in and take stuff and redistribute it around the house. Any rooms he does not need to go into, put child locks on them too so he can't go in there and mess with stuff.
Change your expectations. EXPECT him to lose EVERYTHING! Hard to accept, but your reality is showing the facts you need to deal with.
You may be having a hard time keeping your temper because you are very likely suffering from burnout. Even if you don't "need" someone to take care of him and to find the lost items, you do NEED time to get out of the house and do things for yourself and by yourself. It will help keep your sanity. So please line up some caregivers ASAP. There are agencies. Or ask around to your friends or on an online facebook group for your local area. Someone will know someone who can help you.
I had a very hard time thinking my mom was at the right level for any help. But the caregivers we had at home were priceless and mom loved them. Even though she couldn't remember their names or why they were coming here. It took a LOT of pressure off me so I could be more patient.
When I had her evaluated at the assisted living (and other types of care) facility, I was surprised that they said assisted living with extra levels of help would be a good place for her to start. I was right in thinking that memory care was not the right fit at this time. Some day it will be, but not today.
It's going to take some energy to get these changes in place, but it will all be a HUGE help to you.
Best of luck!
* He may need caregiver for several hours a day - to keep an eye on him and give you a respite.
* Lock up just about everything so you'll know where important things are. Even if the TV remote and he can only use when you / someone else changes the channel. It isn't an optimal situation although it could help you - as this situation likely will not get better, only worse - if you keep going as you are.
* One thing YOU do not want to lose is ... your mind.
To emphasize on another's response below - in part:
"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.'
Hugs to you, Gena
You are the "human being guy" and no person has unlimited patience. We all have human emotion and we all get angry.
See if you can meet with a Geriatric Psychologist who can assist you in moving away from your caretaking career and into a life where you can do hobbies or volunteer work: both offer social and emotional rewards.
Perhaps an activities director could help Dad stay busy?
The 10 steps ahead need: As an example, we knew my Mom would hide her food and pills (she merely thought she was getting rid of unnecesary items), so we had to watch for that ALWAYS. Watch him like a hawk. This will be an evolving need. He may wander, fall down stairs etc. Put bells on him.
Also, not sure if you realize, but your husband is getting dangerous to both you and him. Short term, I would check heaters and burners at night and when he has been moving around. Long term, He is clearly starting to need more supervision than you can give. If you want to stay put, I would hire help asap. A little at first, more later.
A facility is also something to consider, now or later. A select few can accommodate a non-dementia spouse, but cost is a consideration. Talk with your kids about this. They may have ideas you haven't thought of. Maybe they want to make a move closer or have you move in. God bless these life changes. You love your husband, and it will work out.
I have to disagree with part of your comment, the part where you suggest that the OP ask their 'kids' for guidance or the possibility that they would 'want her to move in with them.' Please, don't suggest that we elders (I'm 65) intentionally place planning and care needs upon our adult children, that is sad and disastrous and the OP has already expressed her aversion to asking for help from family, neighbors and friends.
Imo, if an adult child wants to volunteer the help or make suggestions without being asked and because they choose to open their eyes and recognize the stress, that is fine, but we seniors need to do our own life planning and not burden our families with our aging issues. There will come a time when that need to seek family help is inevitable and the result of unforeseen life events, best to not rush the process.
I've had to step in and take over following my dear Dad's death and I am certain that if he'd known that I'd be going it alone (with my daughter's support), he'd have thought twice about making me estate Rep and POA. My daughter and I had already decided, on our own, to uproot and move to their out of state locale and intended to make the move the spring following his sudden death from Covid during thev fall before and that was not something he'd ever have asked of us. We could see that Mom's care needs were increasing and we wanted to make the move for them and for ourselves We were a very close and interdependent multigenerational family.
Sry, I ended up spelling out too much of my life story. It's just that this forum is resplendent with frayed and desperate caregivers, many of whom never volunteered for the care burdens they have ended up with and NPD parents who failed to make adequate plans for themselves in the assumption that 'the kids' would simply assume these onerous caregiving roles, even for parents who denied them the love that any child needs.
It's a very difficult dance, this aging process and its advancing needs. Not all families are close or able to step in and few (I hope it's very few) of us wish to intentionally or purposefully burden our adult children with our own increasing care needs. I certainly do not.
Btw, the rest of your post is spot-on!