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Helping out occasionally usually isn’t a problem. When there is no end in sight, we can start to feel hopeless.
It is essential to take breaks. If we spend every moment caring for others we lose sight of ourselves.
I had absolutely no frame of reference when it came to caregiving.
Neither of my parents cared for their parents, so I was on my own trying to figure it out.
I was already late in the game by the time I found this forum.
Caregiving is a major change in our lives. I would never choose to do full time caregiving in my home ever again.
I loved my mom but I wish that I had approached my mother early on and told her that caregiving was taking a large toll on me and that I needed to resume my own life.
I am not complaining because i want to take care of him. I just want to know how i can be happy and less anxious doing it.
A) recognizing that fact
B) accepting it.
When my brother fell ill I think I had always seen myself, in my own mind, as the NOT anxious one, the NOT needy one, the one who COULD take control when needed, the "capable" one. Yet when my bro, always the Hansel to my Gretel through our lives, in any dark wood, fell ill I felt totally helpless. Part of my love of AC was my coming here feeling desperate and helpless and hopeless, and receiving the comfort of community. If I envy "believers" one thing, it is the sense of "community" and "support" they feel in fellow parishioners.
So I suddenly was the deer literally FROZEN in the headlights, sometimes so anxious that I wanted to shout, "Please, EVERYONE just shut up; I can't hear you; I can't separate out your voices; I can't function".
So I had to recognize it. And I had to accept it. And I had to function WITH it, because it was me. A part of me. I had to learn I was no rock of anything, and I was just one more needy person who wanted help and comfort.
Odd to say that for me this recognition of all of this was a comfort, a learning experience. BUT IT WAS. And out of all of it, I treasure that. I finally can say "Hey, I have a bit of an anxiety disorder!" I can know I will never have hope of attaining any kind of perfection, and that's OK.
I thank you for this really fascinating question. Hope it gets moved to discussion where it can have a good long life. I guess for me the answer is "I think I never WILL overcome it".
It sort of surprises me to know that you struggled too. It kind of makes me feel more normal now! LOL 😆
You’re right. We must accept what is before us. I was in deep denial when I was caregiving.
I had such a long journey. Mom lived to be 95. Sometimes, I wonder how I didn’t completely lose my mind.
“Not everything can be fixed.”
We are so programmed to think that either we have to have the answers, or work to find the answer, or BE the answer, that when dementia or long-term illness hits, we feel like failures.
We can’t fix the situation, and so many of us have lived our lives working hard, and pulling ourselves up by the bootstraps, in order to clear hurdles placed in front of us.
Then comes the aging or illness or cognitive decline of a LO, and we just want to do more, be more and just plain GET IT FIGURED OUT.
We come to this forum desperate for answers.
So, when I read that “Not everything can be fixed.”, I felt like I could finally exhale. I could proceed with making arrangements for the predicament I found my mother in, instead of circling over and over back into despair about not being able to puzzle or work or worry myself into finding a solution that would just make everything normal again.
So, thank you, whomever originally posted that answer. I’m so very grateful.
I felt like a failure at certain times too. We weren’t failures. We were doing our best.
On top of that my dad seems to be declining quickly now, not sure how much time he has left. He has been in the hospital since Sunday. Today he didn’t want to eat anything which is very unusual for him. He just wanted juice or soda. He has been sleeping a lot. He was awake for maybe 5 minutes if that while I was there. He has heart failure, colon cancer and apparently now his kidneys are not functioning very well.
I’m sad that I have to do all the logistics now to get Medicaid. This is at the point where I just want to be a loving daughter and sit with him at the hospital. I think he might be dying. Just really depressed about it all.
I take comfort that I have this blog of helpful strangers who are walking the same walk as I am. Posting on this blog helps me immensely, there is not much else that helps me feel better.
You have a lot on your plate right now. It’s perfectly normal to be anxious during these times.
I am going to be optimistic with you if your attorney is hopeful.
Keep us posted.
Finding this site has helped me cope so much because everyone is so helpful. It is such a relief to talk to people who actually understand what I'm going through and the advice has been fantastic.
Therapy saved my life. It was difficult at first. It’s hard to open up and speak about painful experiences.
I had a terrific therapist who was everything that I needed in a therapist.
You really did start young if you helped care for your grandmother as a child.
I’m sure that you are a very compassionate nurse. I deeply respect and admire nurses. A good nurse is a patient’s best friend.
Some of the Scandi concepts really inspire me.
Friluftsliv & Hygge especially. Just started a book on the Finnish concept of Sisu.
Professional massages.
Magnesium glycinate 400 mg in the evening before bed. It helps reduce stress and anxiety.
L theanine before bed. It helps me go to sleep.
Thank you for your kind words about nurses. My grandma always had so much admiration for them and that probably had a lot to do with why I became one. She was still alive when my mom graduated from nursing school and she was so proud.
I always loved building relationship with my patients the most.
The first step is always the hardest. Therapy is a wonderful investment. You will see results if you stay focused on your goals.
I’m glad that you cherish your memories of your grandmother. I thought the world of my grandparents too.
I just looked it up ‘floating in a salt pod.’ I would love that. That looks amazing. I bet that it is extremely relaxing. I can definitely see how this would be beneficial for relieving stress.
I burn a candle and listen to music when I soak in the tub!
I have purple orchids that I love in my bathroom.
Was just reading about Sisu. It’s really interesting.
Do you have ancestry from Finland? I love the translation or definition of the word, Sisu.
It’s interesting that the Bishop spoke about ‘guts.’ Yeah, I can relate to how this is very applicable for a caregiver. It most certainly does take guts to move forward. I appreciate the Bishop’s outlook on trusting our gut.
Caregiving certainly has been a struggle for me. I had always been resourceful and resilient, but caregiving for my demented mother 24/7/365 blew through all my inner strength in a flash. Something I learned on this forum is that caregivers don't need to do all the hands-on care. Seeing to it that mom is well taken care of is also caregiving. That realization made all the difference. It was suddenly clear that I needed to place mom and I set out to make that happen. Looking back now, I see that taking care of mom started out as an act of love, which soon became more of an obligation, which quickly turned to resentment and drudgery with no end in sight. I had naively assumed I would get help from friends and family, but that never materialized. I lost all hope. So, long story short, I arranged to place mom in AL/MC and that has given me a light at the end of the tunnel and motivation to get my life back. I had underestimated how just seeing the finish line could lift my spirits. I am grateful for the help I found here on this forum.
That cathartic moment came when I acknowledged to myself that:
- I cannot be everything
- I cannot fix everything
- I cannot make her happy
- I can focus on keeping her safe
I didn’t realize how much my mother’s combative nature left me depressed and anxious until she went into care and I was still jumpy, and kept waking during the night, certain she was calling for me. That has faded over the year since she went into care.
Before the pandemic I played hockey because skating hard and slamming guys into the boards blew off my stress. I like to sing my moods. If you hear me wailing hard rock while stomping about, flipping birds, I have had a very bad day.
I spend time in the woods. I plant trees (over a thousand so far). I sit outdoors on a clear night and ponder the stars. I volunteer with dogs. In the summer I float on my back in my pool and stare up into the sky. I have shed some difficult people. I have changed my perspective and priorities, simplified, and become more reclusive. I have given myself permission to live my own life, my own way.
i fell down? i get up again.
fall down 7 times, stand up 8.
So those are my qualifications...now I'll skip to what's been helpful:
1: Putting siblings and other non-contributing family members on the back burner... expectations create resentments: I spent a lot of time trying to send the perfect update emails with very little response from my siblings. Then tried to update grandkids on group messages. I found very few of my mother's 40 grandchildren were interested, and my siblings would usually not respond. I now just ask them for money, and I've stopped updating everyone. I post photos on Facebook for people who follow me and that's it. If people want to do video calls ...they have to do it on my schedule. For years, the stress of expectations of other people caring about what I was going through was eating me up inside. I finally decided to just focus on myself and my mother and ignore everyone else and that's been very helpful.
2: Al-Anon meetings online have been very helpful in helping me to detach and let go of control. If you go to the Al-Anon website there's a list of Zoom meetings. I find most of us qualify for Al-Anon in one way or another... In my case my mother was the child of an alcoholic, and those unresolved issues from her past have come out in full force at the end of her life.
3: Therapy on a short-term basis, just to deal with the stress...online, because I don't have the time to travel to a physical location.
4: Hiring outside caregivers to help though it has been very expensive. I feel guilty asking my siblings to contribute, but I get over it. I need to have other people see my mother for her sake as well as mine because I lose my temper more rapidly when I'm taking care of her constantly. Again I'm aware that's not within everybody's budget but I went to my siblings and just said they had to help pay.
5: Meditation and other apps. I resisted meditation a lot of my life because I misunderstood it. I thought it was about zoning out-- but it was more about being aware of how destructive and negative my thinking is, and that awareness would help me reset a bit during my worst moments with my mother. I like using the Calm app , and there's something called Tapping Solution which seems a little woo-woo at first but is also very helpful.
6: Reaching out to friends who understand... This is very hard because people who have not been caregivers of elderly people have no idea what an entails. It's like taking care of a 2-year-old, except it's sad. You are enmeshed in the darkness instead of hurtling towards the light.
7: Exercise ...even when I don't want to... Even if it's just walking on a treadmill at the gym it helps immensely.
For everyone going through this experience I send love and support. Today was a hard day for me. My mother was supposed to have 3 to 5 months to live When I moved out 5 months ago...and I woke up suddenly terrified that she would live another 3 to 5 years. Since I've moved out to be near her she's improved immensely. I'm sorry to say that this causes me great anxiety. Financially as well as emotionally and personally this is an incredible strain. But I've also determined that this is what I need to do in order to save myself from the guilt and remorse that I had with my father by not being there. I truly believe I'm doing the right thing for myself... so please no judgment from others. We do what we have to do for ourselves.
1. My brother, sister and I get along and we recognize each other's faults, insecurities and strengths. Although there is jealousy and competition, we never let it get in the way of a relationship with each other. Therefore, when my brother told me that he could no longer take care of my mother by himself, I told him what I needed to move to where she was, and he took care of finding me a place to stay. I even gave him power of attorney to use my signature.
2. Once I arrived, I took over seeing my Mom every day. Unbeknownst to all of us, my brother fell ill and died 2 years later. However, during those 2 years, he supported me mentally, and he and I planned for her future. He was the favorite child so during those 2 years, I said a lot "<brother> told me to do this" and my Mom would comply. At one point, he told me that I needed to find a support group, and I did. It really, really helps to have someone from the outside, just be blunt. It hurts, however, there usually is some truth to what they are telling you. My sister is the catastrophic thinker. I spent a lot of time talking her down the cliff. That took my mind off of my Mother....my brother couldn't deal with my sister's catastrophic mentality.
3. Early on, my brother and sister determined that all money decisions went through me. This had to happen because my mother would tell one person something and another person something else. There were several bills that were paid, that didn't have to be paid and now I had to follow back up to get the money back. My Mom was promising large sums of money to grandkids that she needed for her own care. This was the biggest decision we made. Now when my Mother asked for anything, they referred the request to me. It took a huge load off of them and me, since I could make simple decisions, like what prescription drugs she took, on a moment's notice. My Mom was pissed, however, the siblings and grandchildren referred all monetary decisions to me and she had to accept it. BTW, I still gave "gifts" to my brother that my mother had continuously given him all throughout his life. He didn't ask, I asked him. It wasn't prompted by my Mom and he knew.
4. Somehow, counselling found me. I don't know how. The person helped me understand how to deal the anger that I felt after my Mom's refusal to do what I asked. Everyone touts exercise. It doesn't work for me. However, what does work for me is repetitive tasks. The counselor helped me find more tools, like mindfulness.
5. As previously stated, I moved states (and culture) to be near my Mom. My Mom was experiencing some health issues that I knew could be medical. However, the people in my home state said it was normal. Talking to friends back at my "adult life" state really helped guide me to resources. After discussing with my siblings and SIL, we knew the direction we wanted to go. Therefore, we were all informed of decisions and why and could discuss future decisions with the knowledge from the past.
6. My sister, the catastrophic thinker, still has lots of contacts here in the "home" state. I relied on her and my sister-in-law to find resources, when I was too emotionally busy dealing with my Mom.
7. I have taken month long trips away from my Mom. My sister and sister-in-law are backups for care during this time.
So it takes a whole family with different strengths and weaknesses and a lot of trust from each other, to deal with the anxiety and frustrations. It doesn't stop my depression, however, I'm learning to work though it as my depression is completely within my control.
As I said, I'm lucky.
Therapy has helped many of us!
Unfortunately, that's not how her life ended and worse yet, she did not even want any hired help in our home despite several falls at our place. By April 2013, a fall injury sent her to rehab, then a nursing home when Kaiser, her doctor and two of my remote siblings (lives in TX and OR States) would not allow her back home for her safety since Mom and I lived alone in CA and I at age 57 had to return back to work.
Mom got very nasty and bullied me blaming me for not allowing her back to what she called "Her Place" and tried to throw me out in spite of the fact that we owned our property jointly. I proved our shared ownership with county records I still could not convince Mom! Heck, I spent nearly as much hours caring for her as with my past employment. All the fun we enjoyed was in the past. Mom always wanted control and fought when things did not go her way. I did not put up with one ounce of her complaints but offered to do what had to be done as her financial and medical POA at the time.
My remote family helped with Mom's permanent facility placement since I could no longer care for her. I lost 15 pounds from trying to help keep this lady home who was my mother. I both loved and hated her by her unexcused behavior.
In late 2013, our mother was moved to an OR facility near his and his spouses home, then my brother took over as her POA when I could no longer handle decisions. One year later, our mother peacefully passed away in her facility private room at age 95, one week before Thanksgiving. We were relieved we no longer had to struggle with her!
find time for yourself do something you enjoy even if it’s for an hour or a few!!! You and your mind needs a break from it all, to re boot!!!
Have a mind set at taking one day at a time and if your having a bad one, remember tomorrow is another day and hopefully it will be better!!!
depressed, anxious, and not functioning on a high level which I
need to do. Fortunately, my partner does not need help with daily
living. However, being around all the forgetting, confusion, and
mood swings was more than I could withstand. He is now in our
apartment and I am in another location. He visits for long weekends.
You should consider not being a caregiver. Try to get someone else to do this.
You are sacrificing you mental and physical health. You will be
ruining your life and it will only get worse and not better. Also getting
massages for stress really works. Make sure to have long term care or
critical care insurance so you can afford to get help!!!!!
I think the most stressful part of caregiving is the feeling that your own life is slipping away from you in service to the person you are caring for. It’s a loss of control. You become emotionally, financially, socially, and often medically stressed because your life has been taken over by the person you are caring for. It’s important to remind yourself that you have a CHOICE. You are allowed to CHOOSE how much you give of yourself. This does not make you a bad person, it makes you human. You are entitled to live your life. Remind yourself of that as well as all the people telling you “what you should be doing”. Usually what they think you should be doing is sacrificing your own existence to make things easier for them. Ignore those people, and tell them immediately that their advice is not helpful. It’s the reason I will NOT uproot my life and move 3000 miles away to move in with my father. I could not live with him 24/7 and keep my sanity, my profession, or my own support system. Not going to happen. He lives alone, will never agree to leave his house, so when an event happens that triggers placement I will deal that. I love my father, but I love myself too, and I the life I have spent decades building for myself.
Our loved one’s journeys will eventually end, and we have to have lives that we have maintained to carry on with when they are gone.