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Caring for my 90 yr old mom who is living with me, battling memory issues and beginning dementia symptoms.

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I totally get where you are coming from. I have been caring for my Mom with serious mental health issues including narcissism and verbal abuse for over 12 years. It has been hands down the biggest challenge of my life and there are days when I want to just walk away. One think that has helped me is the practice of automatic writing based on Julia Cameron’s the Artist Way book. Basically you write nonstop for 2-3 pages. This allows you to release all the negativity from your mind. I then destroy the pages. I alway get a lot of insight from the pages. Julia also encourages the reader to schedule a date with themselves to do something fun every week. I hope this helps. I wish all of you peace.
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Micifu Sep 2021
I can relate with you so much. Thanks for sharing.
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The feelings are real. Caregiving is tough because the situations will defy logic. A once-affectionate parent may start to act mean and nasty, because of pain and dementia. People, including relatives, may diminish your role as a caretaker. I have an uncle who keeps telling others that he doesn’t respect me because all I am is a caregiver, while his kids are millionaires—yes, you will encounter this type of behavior and it is unjust unfair irrational, your logical mind will feel helpless, which is where your feelings come in—your body will alert you on how to self-care. When you start feeling exhausted you le body will tell you to fortify the boundaries and rest. Often caregivers are ignored, few will ask how you are doing, and your own feelings may be the only ones “looking out for you “, like your anger telling you to not allow a relative to disrespect you, your sorrow grieving a parent who can no longer be a parent you now you must be the parent.. your feelings can be the sole sentinel guarding your well-being. Definitely if your body is aching it’s because you are feeling some intense emotions, which go with the territory of caretaking. Fellow caretakers I ask you to take care of yourself. Listen to your body as it advocates for your heart and soul and mental health.
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The simple answer is “No.” Logic tells you to take care of yourself and rely on your education and training for caregiving, then Love gets in the way and you fall apart.
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I’m not a psychologist but experience has taught me that you can’t force an emotion. No amount of willpower can do that. Manipulation and gaslighting can only go so far, until we snap, because our Intuition can sense that things are “off”. Our bodies will always tell the truth. We may lie to ourselves and pretend that we’re okay but then we have bursts of anger, sadness, resentment. Caretaking challenges everything-security, routine, expectations, health, resilience. No one can understand caretaking unless they’ve experienced it, and the emotions are intense—wanting to do everything for a loved one, while also resenting them, trying so hard to please while also wanting to give up. So many paradoxes and contradictions that can leave you confused and your body and mind helter Skelter. Self-care is crucial for caretakers. Absolutely give yourself permission for triple doses of TLC and forgiveness. Allow yourself and your loved one to embrace the uncertainty and confusion that are a part of this process of change. Because of physical pain and dementia our loved ones will defy logic and reason. Our emotions are our beacons and guides—our anger, fatigue, grief, relief and despair are real: we are human and mortal and find it difficult to cope with the vastness and mystery of Life.
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CJLC1234 Aug 2021
You really couldn't have said it better! Helping all while being resentful, trying to please while wanting to give up! That hits the nail on the head. Not to mention the physical exhaustion. Because my folks are 89 and 86, they feel that at 62 I'm a spring chicken and I should be spry enough and not be tired. I've tried to explain to them that I have RA, Graves disease so my thyroid no longer exists, sleep apnea along with a long list of other ailments that just make me exhausted all the time. I'm sure you've heard that I'm sick and tired of being sick and tired!
Your answer just stuck out as being a true representation of what caregiving can do to a person. Just wanted you to know and thank you!!
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Practical Things that helped me with my 95 year old mom.
I had a "go bag" packed for her and one for myself. There were emergencies usually at 1 AM and there was a trip to the ER. First time I was unprepared and things that I needed were not packed.

Next I needed to do one fun thing a day, and one random act of kindness. I took breaks and even took two respite trips for myself. I knew I needed a break. It was more expensive to hire 24 hour care than my 4 day vacation with my daughters but I needed rest.

I worked a full time job 6 1/2 hours a day with a 15 minute commute and had a home healthcare person come every day for 3 hours to give her a shower, make breakfast and lunch and take her for routine dr appointments like INR tests.
She watched tv and slept until I returned. I bought a recliner and she was very comfortable. I did check out getting a monitor so I could see how she was. New apple watch monitored her in case she needed medical attention . Check into tech devices that might help.
I took her to eye dr for shots due to macular degeneration. Watching her get shot in her eye was more than I could handle so we stopped and got a milk shake on
the way home each time. It was a small treat and she enjoyed it.
I did listen to music to relax and that really helped. I would sing and dance in the kitchen .
I know what you are up against and it is the hardest thing I ever did. You will find a way and know that there are resources as her care becomes more. Check out what
options are available.
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gmcaregvr: I was not in this dynamic of having a fulltime job as I was an elder myself when I had to move in with my mother from out of state; I cannot fathom your challenges.
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Hi GM, you are in the right place to get answers. I found this forum incredibly helpful and supportive. I can't add much to this discussion, other than what others have posted already. It just blows me away that there are such kind folks in the world. I followed up today on a rumor I heard about Mother Theresa. It was true, she doubted her faith for decades and after her death, her poignant letters were released. None of us can do this alone, you must know this already. I wish I had a magic wand to help you get through this. I don't, all I can do is send you my best wishes and hope you find the help you need. Peace.
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In regards to routine, would it help to bring in a nurse or part-time caretaker to establish a routine with your mom? Establishing her routine will help to balance your routine and will help with your self-care. Be patient with yourself, this requires trial and error. And as for feelings, be extra gentle with yourself. Many of us are new at caregiving, life doesn’t offer rehearsals so it’s often one step forward three steps back. I think that a lot of intense feelings come up—your feelings and your mom’s because illness and aging bring forth issues of death and mortality, and we are never ready for this. I grew up in a very religious Catholic household and believe me, all the prayers and catechism still don’t quell our very human fears, only a fanatic wouldn’t be scared and fanaticism isn’t healthy. While it’s scary to confront death can, paradoxically, make us more alive. I know that Dad’s days are numbered and even if he does defy the odds he has lost a lot of weight and is weak. This is a constant reminder to me of —what really matters? What can I release. For example, Dad has always been short tempered and easily angered, I tend to react, retort, am very impatient. Whenever he says something hurtful my instant reflex is to react, answer back, but lately, because of the awareness of death, and of my aging i ask myself, is this worth it? Can I just pretend I didn’t hear that? I’ve realised that my reacting to everything dad—and others—say to me is a habit, a bad one that I don’t need to keep. That age old question if , if you knew you had only a few months to live, what would you do with your life, truly resonates with me now. Yes, Dad can be very mean and inconsiderate, but he doesn’t have long to live, and yes, many times I’m like that too. I think that the reason why caretaking brings out so many intense emotions is because death—so imminent and in front of us-is begging us to examine our lives with a laser focus. It’s like being on a sinking ship and asking, what can I throw overboard? These are scary questions, too scary to ask when things are going well, but caretaking brings them out in the open because suddenly we see how little time we have left, especially when caretaking takes over our routine snd we feel overwhelmed. That’s when we start to simplify/-I don’t need so much stuff, I don’t need everyone to like or approve of me, I don’t need to be perfect or “right”.
please talk to your physician about recommendations for assistance in caretaking via a home health aid
best of luck to you and your mother
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I am fortunate that my Mom lives in her own home and my brother lives there. We have 7 to 8 hours of caregivers daily, and I take
8 to 12 hours a week to fill in , visit and usually bring healthy home cooked meals. BUT, I still feel burnt out and frustrated. I have my own health issues.
What helps me is to plan something "fun" to do. Yesterday, we had good friends for drinks and dinner. I laughed alot and that relieved so much stress. My anxiety and unhappiness vanished.
Now, I am planning my next "fun" activity. Take care of yourself.
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Sometimes it helps to put on your therapist hat and talk to yourself as if you were your own client. What would you say to a client in the situation you are in?

I believe you are not asking about the 'how' of a 'routine' - the question is How do YOU do it? There isn't any routine. It is a matter of managing what is and what comes up.

I believe you might tell your client (that's you, the client) to:
1. Get some support.
2. Hire other/s
3. Enlist / ask neighbors / friends (as is possible to support you)
4. Do are you feeling you need to do care duties 'full time' ? This is an important question. Why haven't you arranged for helpers / caregivers before now?
5. Find some down time to unwind, relax, find some fun / joy -
6. Being a therapist (and even if not a therapist), you know you cannot run on empty.
7. It is time to start researching placement options. Perhaps not move your mom into one tomorrow; you need to start looking at options.
* You can only be an effective therapist for another person when you are present 100% for your clients. This is not possible if you are worn out.
Gena / Touch Matters
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As an only child with a full-time
job, family and a 90 year old mom in AL right down the street —I know it isn’t easy. I understand we sometimes don’t have a place to “park” some of those feelings-despair, resentment, sadness, frustration and guilt are a few. Those are all normal emotions to feel and exude when you feel too much has been put upon you. I find that accepting the way life is and not wishing or hoping for another situation really helps. It doesn’t rid you necessarily of those feelings, but they dissipate some. Watching someone who raised you, who you looked to to help you and listen, now needs you to do it instead is tough. We wait for the next doctor’s visit or illness. Don’t do it. She is 90. Those are 90 year old parts and they weren’t meant to last forever. Remember you are not alone; here, for example, we are all listening and supporting you and wishing you well. And don’t forget this pandemic blankets a layer of anxiety over all of us-especially caring for the elderly. That is in our subconscious 24-7. I take walks, make myself nice coffee, find a funny show to watch, play a game and try my best to decompress when I start to get overwhelmed. Finding a caregiver-someone to come in a few days a week to help you is ideal.
Take care!
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I found that humor helps deal with the mess of stress I felt when my mom lived with us (for 5 years) when she had Alzheimer's. I even wrote a book about caring for her called, "My Mother Has Alzheimer's and My Dog has Tapeworms: A Caregiver's Tale." I thought of the title when I was driving home from work 1 day, and I realized that this "broad's" once broad life was reduced to the pressing health concerns of my mom and dog. I tried to write it with humor and heart, since you need both when dealing with Alzheimer's. The juggling act of working and caregiving can be difficult; just try to do the best you can. My mom wandered and I'd chase her out the door, so I got my exercise, which also helped. (Hubby watched her when I couldn't.)
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You can't do it all yourself.

Hire a Caregiver or a Live In
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I can relate. I’m an only child who, in the past decade, experienced the death of my mom, the deaths of three good friends, and now, my dad’s metastatic pancreatic cancer and extreme mood swings, as well as the “true colors” of cold hearted relatives. But I’ve also experienced a lot of love loyalty and kindness from friends and neighbors. Feelings are tough, but my experience has been to face then listen to them really ask the message they are conveying. Anger isn’t always bad, it teaches us to be firm about boundaries. Selfishness isn’t always bad, as caregivers we can be burnt out regularly abd we need to steal away time—when our loved ones are sleeping, for example, to just watch a silly film or grab a coffee. Envy towards those who are not in our shoes may indicate the need to not forget our dreams, to not give up hope on our heart’s desires. As a writer and artist I used to have so much anxiety about my routine , about not being able to be creative while caretaking but I’ve been pleasantly surprised—I’ve learned—in the manner of Jane Austen—to steal away a few minutes throughout the day to scrubbed, sketch. I was only able to do that when I accepted the moment for what it was—not getting angry or being in denial but just saying ok I’m here right here what can I do to move forward, what can this present moment teach me? Paradoxically my routine is more focussed and disciplined now than it was when I was in my twenties and had endless time and freedom. I realise now that I had serious lessons to learn about patience, being in the Now, acceptance, and just appreciating each moment for what it is, releasing all “shoulds”. I’ve gone to realise that a lot of unhappiness comes from demanding and expecting that life has to be a certain way. This doesn’t mean that I let go of standards or ambitions, it just means that in order for me to reach that vision I need to be right here right now, warts and all.
good luck to you. One day at a time, and in truly hard days, just one minute at a time….
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Slartabart Aug 2021
That was a very wise and beautiful post, Leah. Thank you so much. There was a lot of helpful info packed into it. I will need to read it again, more than a few times, in order to glean all of the wisdom you have offered. You must be an extremely wonderful person to know.

I wish I were there, where you are. I hope to be.
Thanks so much for sharing your thoughts and inspirations.
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Hi, Gmcaregvr!

That was a huge problem for my sister and me. We shared custody of my mother who had Alzheimer’s for 7 years. One week with her, one week with me. We both work full time. Once we got a healthcare provider during the day, we put in place a daily routine to run the same at both houses. I returned home an hour before the provider left so that I could take care of any chores, preps or errands that I needed to as my mother required full attention. The goal for the provider was for her to try and keep mom up during the day so that we could sleep at the same time as her when we got off. Unfortunately, that didn’t always happen. She stayed up most of the night and for a few years, I got no sleep. I tried getting in bed with her at the same time, every night and it worked, until she’d decide she was no longer sleepy. I refused to medicate her. After a while, I would put away any harmful items in her bedroom and give her things to do when she wouldn’t sleep (she was sleeping during the day). She loved folding clothes, reading her Bible and looking at photos of her family. Some nights, I’d put a small basket of clean towels in the room for her to fold with very soft music in the background while I lay on a pallet across the doorway. Once she’d finish, she’d touch me and tell me to come to bed because she was finished cleaning up. Also, understanding her body language, since she could no longer articulate her discomforts, was important. I knew when she had pain, bad gas cramps or was, maybe, constipated. I constantly studied the behaviors/science of Alzheimer’s so that I was in tune with her. Keeping a close regimen on her diet and daily routines helped. For us, maximizing the use of our daily provider, maintaining specific, consistent routines for us and mom, and taking advantage of our week off from her when she was at the other’s home was key. Finally, ask for help when you need it. Hope this helps.
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If it is your own feelings you are asking about, first you have to identify those feelings. Anxiety and fear and depression in watching you mother deteriorate?

If you have a full time job then you are not doing 24/7 hands on cate taking. If your mother needs 24/7 care, you must have arranged for some outside help.

With your mother living in your house, you are probably anxious about how much your mother's needs are going to increase as time goes on. You can arrange for increasing amounts of outside help as it is needed.
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Are feelings you are trying to manage your own or your mom's?

What are you looking for in a routine?
Your mom will do better with a consistent routine. Her pace will probably be a lot slower than you are used to or feel you have time for.

What tasks can you outsource to help you and your mom?
Grocery delivery or pick up will cut time shopping.
Housecleaning service or friends/family helping with these chores will save time too.
Yard service and laundry service or help will save time.
Think of others.


Do you feel as if you never have time by yourself?
If so, you are probably realizing you need a bigger support network for your mom. Your goal is to make sure mom is cared for AND your needs are cared for as well. Ask family, friends, members of faith community, and/or paid help to care for mom enough hours so you can sleep, eat 3 healthy meals are a reasonable pace, get your health appointments, exercise, and have fun daily/weekly with those you enjoy being with.
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GM, welcome!

What would you tell a client/patient who asked you that question?

What would someone tell a single parent of a toddler with a full time job?

Can you be a full time caregiver and have a fulltime job and do both successfully, with no outside support? No.

You either need to hire outside help with your nother's resources, find her adult daycare or find a good facility.

Which you do depends much on resources, family philosophy and local availability.

Please keep posting. We care.
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