Follow
Share

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.

This question has been closed for answers. Ask a New Question.
My heart goes out to you. I am in the same situation for ten years. The problem is not you. I feel strongly that your emotional reactions are absolutely normal. We are human and can only withstand so much . I don’t want to contradict all the thoughtful advice in this form but my experience has been that reading books, joining support groups did nothing to relieve my 24/7 stress . A sobering statistic is that 49% of caregivers die before their loved one. The sooner you get her into memory care the better. Spend down her assets by hiring private 24 hour care. Apply for Medicaid as soon as possible. Make sure you get the long term nursing home version of Medicaid. There are memory care places that are decent and take Medicaid you may need to search and visit places until you find one that you are comfortable with. You might need to wait until a bed opens up. Call the administrator every six to eight weeks to make sure you have regular contact with status report of how long it might be. You are not legally obligated to spend any of your assets. Be absolutely sure that your loved one has not transferred any assets for a five year period. Read the requisite forms very carefully. make sure you have all the paperwork ready . The nursing home will then apply for you. Medicaid pays retroactively to the date of admission. That is true if New York State where I live. You need your life. We only live once . You cannot let yourself be one sick from the stress. It takes an enormous toll of mental and physical health. I had a stroke and a transient ischemic attack in my brain. Became prediabetic and have clinal depression. You deserve to live a happy life. Your anger and temper are psychologically normal reaction to extremely difficult and stressful circumstances that we humans are not evolutionary wired for. In te days before industrialization these issues were shared between extended families that lived together and the burden was divided. Respite / ten days break/ day care doesn’t chance your situation on a long term basis. Your loved one will probably be better off as well make new friends have activities have professional caregivers . Your taxpayer dollars are are meant to be used for benefits like Medicaid you are entitled to . Save yourself. You have done enough. Your life matters. The order of passing should be what nature intended the elderly first then the younger generations. Your loved had a good life hopefully now it’s time to transition her to the next step and you heed to reclaim your freedom your well-being your autonomy. I wish you all the luck in the world .
Helpful Answer (3)
Report

Try meditating and staying in the moment. Remind yourself that you are human. I am new to the anger and frustration too. I can get out and away for a few hours here and there. If you need to be there at mealtimes get out for at least an hour or more if possible in between meals. Don’t set yourself up to fail when it comes to taking care of yourself. One has to remember that they too are important.
Helpful Answer (0)
Report

My sister-in-law cared for my brother who was disabled with Parkinson’s for 22 years. She became my model for avoiding “burnout.” But it required an attitude. Hers was “I love him; he gave me 3 wonderful children and support for my independence. And he loved me.” Who he became over 17 years of progressing Parkinson’s didn’t change how she saw him and their relationship. He was never rude or abusive. But his care needs were 24/7 and physically demanding. Point: consider your reaction to his behavior thru the lens of your relationship with him throughout your marriage. Caregiving requires a “clean” attitude toward him. Difficult/impossible when there is a history of dissatisfaction with him. This is not meant to guilt you, only to point out the possible real source if your feelings.
Helpful Answer (1)
Report

I highly recommend watching the two videos in the link provided by lealonnie1 in her response:
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.
Helpful Answer (3)
Report

Good morning from Australia,

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.
Helpful Answer (7)
Report

I understand your frustration and the temptation to lose control. Maybe some of the following suggestions sound like platitudes and you've probably thought of many yourself, but here they are:
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.
Helpful Answer (1)
Report

Don't take this all as advice. These are just my thoughts, not saying you should act on all of them but they are to get you thinking in new directions.

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.
Helpful Answer (5)
Report

I admire your willingness to see through this. Good for your for attaching finder tiles to important objects. One way to get through these moments is to reduce frustration. Increasing your control can reduce your frustration. For instance, maybe his dinner plate needs to have Velcro Gorilla-glued onto the back and maybe his place setting should have the other half of the Velcro, so that when he eats, he is not interested in carrying the plate all over. You could say, "All the ladies are doing it. It reduces breakage," or whatever to appease him.

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.
Helpful Answer (1)
Report

You need breaks - daily and a bigger break weekly. Find helpers to stay with your husband while you get some "time off." Ask family, friends, members of faith community, and paid help. Use the time off to refresh your mind and spirit so you can - again - laugh off the fry pan in the bedroom. You may need to streamline the homes in rooms your husband uses so there are less "hiding places" and less "stuff" to hide. He may also benefit from activities throughout the day so he has less time or inclination to "help put things away."
Helpful Answer (0)
Report

Have you considered nanny cams in every room? It would make things easier to find…
Helpful Answer (3)
Report

I empathize
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.
Helpful Answer (8)
Report
bundleofjoy Dec 2022
EXCELLENT ADVICE.
(0)
Report
KathleenQ: Perhaps you'll have to consider managed care facility living for your DH, quite possibly memory care.
Helpful Answer (3)
Report

When I lost my temper, and I certainly did, I would console myself with the thought that my mother probably already forgot what I said. That was the only way I could forgive myself.
Helpful Answer (7)
Report

I highly recommend EFT Tapping for tempers, anxiety, stress, anger, overwhelm, burnout, etc. It is a form of energy healing that works similarly to acupuncture but that you can do yourself, without needles, just by tapping on certain acupressure points on the face, torso and hands. I've been caring for my father for the past almost two years, and while he doesn't have dementia, he has been struggling with multiple health conditions, and it's been extremely hard on all of us. I use EFT Tapping every day, as well as Eden Energy Medicine, another form of energy healing, to handle my feelings of overwhelm, stress, anxiety and panic. I don't have a temper when it comes to my father, but I find myself feeling very overwhelmed and panicked at times, and I've had some extremely difficult emotional breakdowns around caregiving. I struggle with mental health issues, and if it weren't for energy healing, there is no way I could have survived this health crisis and taken care of my father as well as I have. Both EFT Tapping and Eden Energy Medicine are extremely simple to learn and practice on your own, with lots of articles online and videos on YouTube. Hope that helps.
Helpful Answer (2)
Report
Tagtae Dec 2022
This sounds interesting I’ll have to check into it. Kinda sounds similar to chakas? Been thinking of getting into yoga and meditation, Breathing exercises. I also like burning beeswax candles. Something about these candles helps me.

my new neighbor has two young autistic children. Asked how she delt with the stress she said crystals and meditation. Lovely lady.
(1)
Report
You would be wise to consider some type of adult daycare for your husband. He will be fine in it, and you will get the much needed respite for yourself. Your physical, emotional, spiritual health will benefit greatly and, thus you will be able to continue the in home care ( for now and as long as you feel you can; for safety reasons this may change). Your patience will be helped when you are allowed to be " off" for the daycare time he will be gone. Do not feel guilty about this; it is for your own and his well being. Or, look into in home care help 2-3 times a week .... Also, even tho the adult children have jobs,you should still have a family meeting, share your distress and needs and, see what options they may have. Perhaps they can rotate a weekend schedule to be with him so you can get out. Or, some families agree to help with the cost of the needed care as their contribution to his care and yours if they cannot give their time. The family needs to be on board with changes so that if, when you need to consider other options such as placement in facility ( memory care unit) it will not be a shock. If they each take say 4 hours each weekend or weekday and are left alone with him, they will better understand what you are doing.
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 .
Helpful Answer (9)
Report

Kathleen,

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.
Helpful Answer (7)
Report

Your husband is no longer safe unsupervised.
Helpful Answer (6)
Report
NeedHelpWithMom Dec 2022
This is the bottom line. He really isn’t safe in his current environment.
(1)
Report
I think one of the most important things that you can do is to acknowledge that you are human.

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.
Helpful Answer (6)
Report

My Mom went through this with my Pop a year before he passed. She was angry all the time and got to the point where she lost respect for him. She has always been a narcissist which made caring for him even more difficult. For 50 plus years he did a lot for her. Putting in-room cameras helps. You can also buy door alarms in case he tries to leave the house. My Pop would misplace everything and blame my Mom much of the time. I understand how frustrating it is for you. He would also bring lots of shed stuff in his room and put stuff in his bed. It only gets worse. Keep medications locked up, food at the table, and baby proof the house. We had to take ammunition out of his guns when he wasn’t looking. He eventually could not remember how to eat, how to wash in the shower, how to go to the bathroom, etc. He passed two weeks after he could no longer walk or eat-even if you tried to feed him. He would spit out his food. He also had violent fits. You might have to call the police. I would start looking for help from family, friends, church, neighbors, etc. I would contact Social Services to see if you could get him qualified for Medicaid and then have Aids to come in via Social Services and help you. Eventually, Hospice will be a good resource. Try to let him be some as long as his environment is safe and baby proofed. Don’t argue with him or cause additional anger. Don’t pick at every wrong thing he does. He won’t remember. If he falls, call 911. If he breaks something, he will get operated on and then go to rehab for three months (most insurance plans have a three month cut off before returning them home). Unfortunately and fortunately this can give you respite time. Expect this to possibly happen. Get POA, Medical Directive, Wills, and funeral costs taken care of now-for you both. It will make things easier once his final time gets closer. You will probably feel extremely drained as he gets worse. Mentally know that you are going to lose him before he’s physically gone. That was very difficult for my Mom. I would get a hospital bed with sides that come up to keep him in his bed once he starts roaming at night. He will have hallucinations which include partaking in events, seeing people in the house, and having conversations. Some situations will anger or scare him. He might try waking you up all night as well. He may urinate all over the house. Everyone deals with a declining loved one differently. Through the bad situations, try to remember that he has no control over what he is doing, and that it won’t last forever. I pray for your peace and relief.
Helpful Answer (4)
Report

Walk outside throw your head back and scream at the top of your lungs. Deep breath. Look at things you see butterfly on flowers, bird eating the worm, neighbors trash, o so pretty white clouds in the blue sky, stray dog using your lawn as a bathroom, the neighbor taking off on their Harley Davidson motorcycles and the purr of the engines in your ear imaging the freedom of riding dead into the wind as a tears rolls down your cheek (oh thats my cheek).

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.
Helpful Answer (7)
Report

@ConnieCaretaker and TouchMatters

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.
Helpful Answer (16)
Report

Security cameras everywhere, even in the bathroom, are my sanity-saver and temper-preventer. (My mom sometimes sits on the toilet for 20 minutes. I used to pop my head in to see if she's ok, which bugged her. I get it...I wouldn't want my adult kids checking on me in the bathroom!) Anyway, having the security cam app open and notifications on lets me focus on other things, like myself on occasion. It reduces my anxiety day and night, and less anxiety means less chance of losing my cool when the inevitable "surprise" occurs. I guess this makes me a control freak, but it's like being a mom to little ones -- you have to know where they are and what they're up to at all times. She doesn't know I'm watching but it gives her the illusion of autonomy and privacy she would miss if someone was right there 24/7. (Pro tips: cover the lights on security cameras with electrical tape, and blend them into an array of stuff ala E.T. in the toy closet.)

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.
Helpful Answer (15)
Report
MargaretMcKen Dec 2022
Great practical answer! Welcome!
(3)
Report
See 1 more reply
I know there is a need for self-time. But yes -- it is distraction.

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.
Helpful Answer (4)
Report

I care for my mother (95) with a bad memory and horrible hearing. I now give her the meds daily after she took day & night at 1 time. I keep in my room away from her.
It requires so much patience. I understand and good luck!
Helpful Answer (6)
Report

So sorry for your very difficult situation.

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!
Helpful Answer (6)
Report

My heart goes out to you.
* 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
Helpful Answer (2)
Report

I understand your dilemma. Live with my mom. I just lost my mind because I went out to run an errand, had reviewed that I would be out for an hour. Set up the phone near her. Left the house. Completed the errand. What I didn't realize was the sound turned down on my cell...she called 5 times in about 5 minutes, leaving wailing messages, including "help me, help me". I came home and just lost my cool. Had a screaming yell at her. What had evoked the cry for help? She had gotten a phone call and no one anwered in the other end. She thought it was me calling her and I was in trouble. After calming down, I reviewed...only say help me if you are hurt or sick. You can leave a message that says: I am confused. And yes, she takes anxiety meds. And I apologized, but still feel like "the bad guy." I usually try to anticipate any scenario, but forgot to check my phone.
Helpful Answer (4)
Report
BurntCaregiver Dec 2022
You are not the "bad guy". You are the "tired guy". You are the "guy at the end of his rope".
You are the "human being guy" and no person has unlimited patience. We all have human emotion and we all get angry.
(6)
Report
Please make an appointment with a Geriatric Psychiatrist for both of you; both of you need help. Getting help for your Dad will help you too: it's a win-win situation.

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?
Helpful Answer (2)
Report
Trani7 Dec 2022
Sorry Connie but this poor woman is up to her eyeballs in caring for her husband and I venture to say that the last thing she needs is to volunteer for something else. She can't afford help as she mentioned that she thinks the daycare is too expensive. She probably needs a lawyer to advise and help her with medicaid. That too is an expense, but she needs options,
(6)
Report
See 1 more reply
If you are able, I found I had to be about 10 steps ahead of my Mom. Try to think of him like a small child that you need to watch, because his brain is becoming that way. It is easier to be loving to small child, because you don't expect as much. Hard to come to terms with that, but you will continue to frustrate yourself otherwise. Try to remember it is even more frustrating for him, and the more frustrated you get, the more he may stress and lose things.

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.
Helpful Answer (4)
Report
Luta65 Dec 2022
SueGood,

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!
(1)
Report
See 1 more reply
Misplacing things is a common sign of dementia. Make a plan for a time when the dementia may get worse. If things get to be too much for you, your husband will need additional in-home caregivers, or you may have to consider moving him to a memory care facility. While he is still able to sign legal documents, make sure all of his (and your) paperwork is in order. You both need to set up powers of attorney for medical (health care proxy) and finanial matters. You both need living wills with your advance medical directives, and you both need wills. This would be a good time to have the discussion with him about his preferences if he becomes unable to care for himself: in-home caregivers or a senior facility. The advantage of a facility is professional staff who know how to handle people with advancing dementia. If you choose a facility, try to find one close to you so that you can visit often and oversee his care. You will have to oversee the work of the in-home caregivers, if you decide on that. Try to find caregivers who know how to handle people with dementia. Make sure that your name is on all of his accounts (make them joint). Now may be the time to set up all accounts online and paperless, especially if you may be having in-home caregivers. If you will have "strangers" coming into your house, lock up all valuables and personal papers, especially financial papers. Connect with a local social worker to discuss his and your options (yours as a family caregiver - there may be local programs to provide assistance for you as well). There may be government subsidized elder care/day care options. All the best to you both!
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter