Perhaps I am experiencing something that not many have. I only want to hear from the long haulers. Advice?

Arimethea, please tell us what you need!

My mom was on about eight medications until January when I put her on hospice care and has an imaginary husband. The only good thing about him being in her mind and forgetting my wonderful dad is that he's always with her, but my dad can't be anymore. He died in 2018, and it completely rocked her world. The imaginary guy showed up two months later, and Dad disappeared. We go along with the tales of Dan the Invisible Man, because he keeps her from being afraid and alone.

Now she's on hospice care. She has congestive heart failure, dementia, gout (that's a new one), an elevated heart rate, she survived Covid in January, and is now having after-effects that cause random bruising and blistering that leads to wounds.

Because of the strange bleeding/bruising stuff that's suddenly cropped up post-Covid, the hospice nurse has taken her off her blood thinner, her blood pressure medication -- everything -- except a diuretic and thyroid. Weirdly, her blood pressure is perfectly normal, her heart rate is in the normal range for the first time in months, and she's doing better than she has in six months.

Consider taking your mom off some of her medications with doctor's supervision, of course. Ask her doctor what they're really doing for her, and are they helping or hurting? I remember years ago my mother telling me of a friend whose wife took him off everything because it was just too much, and he improved greatly. She was intending to let him go peacefully, but he got better, so my mother isn't a unique case where taking fewer meds seems to be a better choice.

I think too many medications are just poisoning our loved ones' bodies rather than making them work better. This could be the case with your mom and might be worth a conversation with the doctor. I know you didn't want to hear that, but I'm not advocating more meds, I'm advocating fewer.

For some reason, Ari, the saying "You can't light yourself on fire to keep others warm" came to my mind. I'm sorry for your circumstances. Maybe if you list some more specific things that bother you, you'll get some tips on them. It sounds like your mom is agitated a lot. Since she's on so many medications, I'm wondering why something that soothes and calms her -- and therefore you, too -- isn't on that list. Does she have any psychiatric care at this time?

Yup.

For anyone caring for a LO with dementia, it doesn't take long to become a “long hauler”. Just a few months of trying to cope with understanding the disease, maintaining your own sanity, and managing the emotions that come with the job, can cause a healthy carer to physically decline themselves. The behavior exhibited by those living with dementia can become not only, as you say, monotonous and annoying to the caregiver ( and I would almost call those emotions benign compared to what may come), but can eat you up in stress, anxiety, and worry. How do you respond to the accusations, the unending repetition, the delusions that the disease causes? How do you answer the unanswerable? Caring for a LO with dementia IS tough, it IS exhausting. This is absolutely the toughest “job” in the world. It is the worst of all diseases, not just of what it does to the LO, but also for its devastating effect on the family. I truly believe that it's harder on the caregiver than on the patient. Probably the most effective way to deal with the disease, and I'm sure you've read many of the posts on this forum, is to figure out her reality and become part of it. We use words like fiblets, and therapeutic fibbing to describe a caregivers attempt to help retain our LO's dignity or to mollify their anxiety. In his book, The Problem of Alzheimer's, Jason Karlawish uses the term “loving deception”. It's true, you can't get thru to them, you can't argue, you can't use logic, so accommodate them as best as you can.

You don't pose a specific question, but I want you to know that you are not alone. Many in this forum are experiencing what you are experiencing, and many have completed that caregiver journey and can certainly relate.

I wish you peace.

Ari,

You have been through so very much with your mom.

It’s hard not to burn out.

Reach out to anyone that can help.

I hope that you can find relief somehow.

We care.

As a former "long hauler" I can tell you that this too shall pass. Will it be exhausting at times? YES! Will it push your patience to its limits at times? YES! Will you lose it at times and say and do things you may later regret? YES! Will it seem at times that there is no end in sight? YES!

BUT.....there is hope out there. It may look like outside help coming in to give you a break, or it may look like having to place your loved one in the appropriate facility, where trained professionals now have the responsibility of her 24/7care.
That's a choice only you can make. You have to do what's not only best for your loved one, but for you as well.

It's hard, no ifs ands or buts, but I will tell you from personal experience, that once your loved one is gone, you will wish for just one more day with them, regardless of what you've been through with them. It's funny how that works, but it's true, so be kind to yourself and your loved one, as we never know what tomorrow will bring. God bless you and keep you.

I don't have advice, and am NOT a long hauler, so I can't really comment on what you are suffering, Arimethea, but I do know it is the common complaint here of many, who like you are doing this care continuously over many years. Some have given up doing it in home, and seem happy that they have. Only you can decide your own limitations. It's always good to hear from you, and you say well and in brief format exactly what it's like to be stuck where you are. I'm so sorry and wish it was better for you. I could never have done what you are doing.

I am technically a long hauler. It started with my dad w/ Alzheimer's in 2014. He passed away in 2018 but my mother had become ill in 2017 so the last year was caring for both. My mom is only mildly cognitively impaired but frequently hospitalized. Each hospitalization makes her cognitively worse and she is also mobility impaired, has heart issues, diabetes, recent strokes, etc,etc,etc. Because she is a mule who is obstinate about following rules and medication compliance, she needs to have an adult with her 24/7. She regularly falls, faints and has bladder or stool incontinence.
It is tough and exhausting. It takes me away from everything that previously brought me joy. It has stolen years from my youngest daughters childhood. It has stolen my career and ruined any chance of saving money for retirement.
This is is my life too.

Wow and wow- long hauler here- that will change once the dementia gets more advanced-in the end, she didn’t talk much. We did put her in memory care( pre Covid) and the activities and other residents helper her a lot. The days are probably very repetitious for her and she needs a change of pace. My mom started getting weird late evenings( sundowners) cried, wanted her family, etc. I finally put her on a tiny amount of Xanax to ease the anxiety, it did help her. I would take a closer look at meds and keep that as something to always be flexible about. We didn’t try to stop the disease process, it was slow , very slow but the behaviors changed with the many, many years. But- i would love to hear her voice say anything about right now, lost her a year ago this Saturday. My prayers to you, it was not easy in any way.

If the medications do not help.
If she has been to doctors and nothing has lessened the agitation, anxiety there are 2 options.
1. You deal with it and live with it. If that is not possible then...
2. You place her in Memory Care.
Usually with dementia some of the obsessive behaviors dissipate, but as one leaves another "problem" often surfaces.
I had to keep a step ahead of my Husband, when he became fixated on something it was often hard to distract or redirect him. I spent 12 years keeping a step ahead!
I went through phases where I had to keep my car keys locked up so he would not take off. I had to lock a gate I had put on my porch so he would not walk away. I had to chain my furniture together so he could not take a chair and put it by the gate that I locked and use the chair to climb over the porch railing. I had to wear my keys around my neck for years so that I could easily open the doors that I kept locked so that he could not get out...and on and on...
You are right it is tough. It is exhausting.
Sometimes for the safety of all involved placing a loved one in a Memory Care facility is the best, safest course of action. Doing so is not a "failure" it is accepting that it is a safer option. (By safe I mean not just physical safety but mental and emotional safety.)

Is it correct to assume that you are your mother's only caregiver?
If such is the case then you need to bring in outside help because you're not coping anymore. This is no reflection on you personally, or how much you love your mom, or how good you are as a caregiver.
At some point everyone who is in the situation where they are the only caregiver to an elderly person will start to burn out and lose it. When the elderly person is needy and also has dementia, one person cannot handle all the caregiving alone. A situation like yours very quickly becomes high risk for elder abuse. Please consider bringing some hired help into the home.
In the meantime, learn how to ignore with kindness. You do not have to answer every question. You do not have to respond every time she repeats the same thing over and over. Sometimes you have to ignore her. The same as with a baby. Sometimes they just have to squawk for a while. It's good for them. If mom goes running in every time the baby fusses a little what will happen is that he will never be able to be alone even to sleep. This applies to elderly people with and without dementia too. If your mom is safe and not at risk of getting hurt, then ignore her sometimes.
Find some outside help too. Monotonous and annoying can very quickly turn into resentment and abuse.

Many of us understand and have been through the same thing ourselves with our LO. It’s a struggle, especially when they are on so many medications and still having problems. Have you discussed this with the doctor who has prescribed her psychotropics? It sounds like she needs a medication protocol adjustment. Sometimes what works for one person doesn’t do anything for another. Furthermore, medications can stop working or lose efficacy so if anxiety symptoms, delusions, hallucinations, and paranoia are still occurring then it’s time for a reassessment. It may be best to have her doctor put her in a medical or psychiatric hospital while the meds are being adjusted so that your LO can be monitored 24/7 to determine what protocol helps and if there are any reactions. This will also be a respite for you, which it sounds like you desperately need.

It is tough, it is exhausting and seemingly unending. The repetition can be hard.
The same lines and stories again and again. Straining those stories for wild flights of fancy that might mean a UTI or are nothing more than a new twist on the same story. Gating off the staircase for safety after finding her crawling up the stairs like some outsized spider and having to bring her back down, hitting and clawing and screaming. Keeping regular toileting trips to keep her safer from skin breakdown and infections. Gating off the kitchen area for safety after finding her rummaging through the kitchen waste can looking for God knows what, plus her walking over to me at the stove while cooking and attempting to put her hand on a hot burner just as something to lean on. Closing off the sun porch for safety to keep her from getting her hands caught in the old windows that she repeatedly opened up and slammed down, plus it stopped her from escaping through the outside door while I’m in the bathroom. Changing wet bedding and wet nightclothes every single day and the mounds of laundry. Scrubbing the floors daily with disinfectant cleaner as she took off her clothes and disposable underwear and walked through to the living room this way. Daily sponge baths and repeated redressing. Keeping her from eating items that weren’t food and making food that she found appetizing as her taste changed. She loved sweet tasting things, so I sprinkled sweetener sparingly on all foods to tempt her to eat. Taking her for walks in the yard until she couldn’t anymore. Then walking ‘round the house until she couldn’t anymore. Then helping her from bed to sofa until she couldn’t anymore. Then a hospice hospital bed in the living room, (with all of duties of bedridden care), so she could see the sunrises until she couldn’t anymore.

It's going to get worse. I'm sorry to say . My mom is 89 Years old and she has dementia and she can't do anything by herself. I'm her mean care taker. My brothers girlfriend helps me sometimes about once a week she gives her a shower because I can't left her. And she takes care of her when I have a doctor's appointment. I use to get very stressed out with her because she hollers for her mom all the time when she starts doing that I start saying other people who have died in the family names. Sometimes I tell her that her mom is in heaven with God Jesus and the rest of the family that is there and sometimes she said that she wants to go home. I tell her that she is home and she said I wanna go home this is not my home I wanna go to Indiana. And when use to get stressed out with her my granddaughter told me to take a deep breath and count to ten forward and backwards . And if I have to stop out side for a few minutes or go into another room for a few minutes. Just be patience with her. Every person who has dementia is different from one person to another . My daughters best friends grandma has it and she tries to leave all the time and she gets into everything at night when their a sleep they have pad locks on everything to keep her out of stuff at night and sometimes they strip her down to a recliner that she sleeps in all the time. My mom has never tried to leave the house she use to close to the door and look it all the time. I will keep you in my prayers 🙏

Arimethea: I can promise you, though you can't see it right now, there is a light at the end of the tunnel.

Yes, Longterm Caregiving is very hard and stressful and so much worse once dementia sets in.
You get burn out fast.
I promised my 97 yr old Dad that he could stay living in his own home and not have to go into a Senior Place.
Luckily I only had to care for him for a short period of time while looking and interviewing for 24 7 Care.
I work and have a life of my own and it only took a few sleepless nights to start driving me crazy.
I was not able to watch him all day and again at night then have the energy or mindset to do it all over again on a couple hrs of sleep.

It took me about a month of checking and interviewing Caregivers to find a few that would work for $9 an hr.
Every one wanted $15-25.
I ended up with a few and they work in shifts.

I installed Nest Cameras so I could keep watch anytime 24 7.

Nendless to say, I let my sisters know there won't be any inheritance left but at least my Dad gets to continue living in his own home and I keep my sanity.

Since he doesn't want to go to a Senior Home, The Insurance Co only pays for Home Health which let's a Nurse come out a couple times a month to change his Cathiter and to check on him.
He also has a Nurse Practioner visit once a month.
They also will pay for an Aide to come 2-3 times a week to give a bath.

Uneeds you have money to hire help or can get others to volunteer help at least 12 hrs a day, you will need to check your love one in to a facility.

Sad but True.

You have to keep yourself healthy and sane.

You have to take care of yourself because you can't depend on anyone else.

One other thought, my Dad went off all medications 3 yrs ago.

Every rx to help with something wojld always require another rx to counteract the side effects from the previous rx.

So, he only takes vitamins and at night he takes an over the counter 3 mg melatonin to help him sleep.

When he gets a "UTI " urinary Tract Infection which is common when you have an indwelling Cathiter he will take an antibiotic.

All Seniors take too many Meds!

Prayers

Ari, the only time I have heard the term longhauler is associated with covid.

The term when related to carrying can be ANY length of time. Some people can be caregivers and some cannot and that is ok. Some cannot manage a minute, few can manage many years. I did four years for mom with Alzheimer's and her husband with age related decline. It wasn't easy.

We all need to develop boundaries and determine when it is too detrimental to ourselves to continue. It is different for everyone. Only you can determine how much more you can take. Then make the appropriate arrangements.

I have learned not to argue about her wanting to go home when we are at home. I am trying to think of each day as her last and how would I want to remember that last day. That helps me to be patient with the repeated stories and the paranoia about who is coming in stealing her jewelry and money. Sometimes I do have to tune her out for my own sanity. I have a support group and really appreciate this forum to see what other people are going through. There are a lot of us! It's like an underground of caregiving that you don't realize until you are pulled into it. Wishing you all the best!

I’m so sorry you are going through this. I’m caring for my MIL w/dementia living in my home for over 3 years. What I’ve learned is I can’t change her, I can only change my inner thoughts and attitudes. Bring some help into the home to give you a break. Develop a list of stock responses. Take many breaks. If you aren’t able to find your inner peace within, you may want to consider another living arrangement. Caring for this type of patient is completely and willingly giving of yourself. Please do not feel guilt/shame if it’s not your calling.

Yup, I've been there. Hubby and I took care of my mom when she had Alzheimer's for 5 years and 3 months (but who's counting?) I had to remind myself that as much as being her sole caregiver wasn't in my plans, Alzheimer's wasn't in hers either. When she'd insult me (over nothing, by the way), I had to remember that it was the disease talking. I coped with it by writing a book called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (My mom and dog were diagnosed with their respective illnesses around the same time.) I tried to write it with humor and heart, since you need both in life, and particularly with Alzheimer's. My mom also accused my husband of going through her purse. She had $5 in there and a lipstick. Let him knock himself out. I even have a chapter entitled "Steel Yourself for Stealing." She was paranoid, too. "Paranoia Can Annoy Ya." (another chapter title.) She also had physical decline, associated with age and dementia. I had no idea of the illusions, delusions, hallucinations, etc., that can accompany Alzheimer's. I thought it was just a disease of memory. There are no easy answers. Just take a deep breath, and take it one day at a time. Maybe the Alzheimer's Association www.alz.org can offer more advice.

You don't mention age or why all the medications.
Perhaps it would be, as others suggested, a good time to review all medications and perhaps eliminate some, if not all, of them.

My mother was only on BP meds, long time. At some point, while in MC, the doctor eliminated one of them. I was not aware that in the last few months mom had not been taking the remaining ones consistently. Her BP seemed to remain "okay" despite this. After she had a stroke, it was even harder to get her to take them as it affected her swallowing.

It might be better to see if they can pare down or get rid of most medications AND find something that can calm her anxiety (that's generally what is behind the repetitive behaviors, esp later in the day. The only time mom needed those was during treatment for her first UTI in MC. She was totally out of control every afternoon/early evening. The lowest dose was just enough to take the edge off and keep her calm. She wasn't doped up. Worked first time, every time. She didn't need to wean off it either.

As some noted, not all medications work the same for all people. It may take some trial periods to find the right one, but it will be worth it if the right one is found!

When my mom had advanced Alz all 5 of us kids and my dad had a conference call and decided to stop all meds. She would have hated to be kept “alive” that way. My husband and I have in our directives to stop all meds (BP and statins currently) upon dementia or other incurable diagnosis should we not be able to make those decisions ourselves. Our kids are very aware how we feel about life and death.

People with dementia know not what they do. Their minds play the same thing over and over in a loop. You have to accept her as she is, and it can get worse. My mother with dementia cannot do anything for herself. She cannot walk, eat, bathe, dress...without help, and sometimes it takes 2 people to move her safely from the bed to the wheel chair, for example. Prepare yourself for what might come. Are you able to have aides help you out and give you a break? Are you able to take care of her if her condition gets worse? Get connected with a social worker and senior community that can help advise you of your options.

As long as she doesn't harm herself or you, not worth trying to change it. Also - as long as both of your needs are met, it doesn't need to change either. You have a choice: either see her behavior as mildly humorous quirks or see it as problems that can not be solved. Either perspective is correct.

If her behavior irritates you all the time, it may be time for a vacation from caregiving - called respite. Many nursing homes will provide respite. Many home health agencies can provide caregivers to allow you to have time off during the week and for an extended weekend away. If resources are tight, consider asking a family member (or many family members) to give you a break.

If you can't see yourself living with this situation any longer, it may be time for a residential facility for your loved one.

You aren't giving enough information about what you want advice about.
How to tune it out? Headphones? I know that wouldn't work for me.
No, pills will not change what is progressing.
Yes, it will only get worse.
If you aren't cut out for this, there is no shame in looking into a facility that is.

Long hauler here. I suggest trying for a shift of perspective. When I left my mom’s Memory Care yesterday (after not seeing her during pandemic,) I thought how I longed for the way things were before. It hit me that this is not the first time I have thought this. I hate saying this, but things aren’t going to improve. Things will shift. Someday, probably sooner than you wish, you will long for the days when your loved one bugged you constantly and displayed the behaviors that are currently irritating. No judgement here. I have absolutely felt like you are feeling now. Some days you will handle it better than other days.

My cousin told me " it takes a very strong person to get old". The older I get the more it is true.hang in there you will get your reward in heaven, no more pain, no more aging, a newbody . Yes it is hard,Be strong.

I don’t have an answer. I’m taking one day at a time with my husband.
I wish I had taken him riding more. Now he eats sleeps and stares at me like he doesn’t know me.
I think you need to look for some kind of help. Like a nursing home.
Truthfully everyone can give advice but until you walk in the person’s shoes you don’t know what it is like. Everyone is different.
Hang strong, hang onto your temper and love her cause she will be gone and you will miss her. Even the bad days.
God bless you.

I have been involved in caretaking four times in my life so I can speak from true experience. Now I am disabled and live in assisted living. One thing I can state 100% true.......if someone is foolish enough to take on someone who has dementia, regardless of who or why, God help them. Eventually (if not sooner), your life will be destroyed by their behaviors. My advice is - written in stone - if you care about yourself and your remaining family, do NOT keep someone with dementia in your home. It will only get worse and worse. Please place them into a facility where they belong. You don't deserve this - no one does. The god days are gone - now look out for yourself.