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We can’t ever change anyone else’s behavior. We can focus on getting additional help when needed. That is more important than trying to receive help from siblings who may or may not be able to help and choose not to do so.
I didn't see your reply. Things have been crazy here.
We went to my friend's salon/spa. Various places have them. I really did find it relaxing!
I also live for a hot bubble bath. I light candles and our exhaust fan is also a bluetooth thing where you can play music so I like to listen to music.
To help my rational self deal with my irrational emotions, I wrote this little poem (which I posted elsewhere in this site). I keep copies in various places...
Feelings Are Facts.
Just let them Be.
Observe them & Respect them.
They have their own Cadence.
Please feel free to keep it, use it and share it!
***** Best wishes to all of you, dear wonderful people, you have been a great help to me during these past 18 months of the dementia journey. Thank you ****
Soft cozy blankets are the best! I use them everyday.
* Do not try to push these feelings away, rather invite them in. Feel through them . . . process through them which is with awareness and acceptance. Then, they move, transform, relax, know you are there listening to them (and they thank you by easing up). ... or get on medication (too).
* It is the resistance, numbing out that adds fuel to that fire.
* Give yourself breaks. Real breaks. Sit down. Turn the music on (or not), get comfortable and sit with all your feelings - without judging them.
* Get up and out - M O V E
* Be self-compassionate. Talk to yourself as if you were your own loving, unconditional loving mother (or father). You need to be your own best friend.
* Every moment is different... nothing that worked 10 minutes or 10 days ago may work (to relieve stressors/mood change) now. Be present in the moment and know it is within YOU to heal.
I am doing this myself. Anxiety and depression, separate, mixed together is challenging to say the least. Know that each moment is an opportunity for HOPE and ACTION. Even non-action is often the 'best' action. Sit quietly. Breathe.
Personally, I 'see' that many of my responses / feelings have to do with resisting WHAT IS and not feeling the GRIEF that is lurking / stirring inside. Be with it is what I try to do ... as much as I feel exhausted and sad / grief stricken. Humbling myself to life and 'what is' ... being in the moment ... knowing when i need support and get it (from within and from others) ... all this makes a difference.
FIND pleasure in little things. I am very fortunate in that nature illuminates my being - trees, wood, earth colors... that beauty is ecstasy to me. Find these moments - these jewels that bring a sense of calm and beauty to your inner world.
Gena / Touch Matters
I struggle with anxiety and depression and in this years-long stressful quagmire I do make sure to exercise, grab moments of fun no matter how small, etc…etc…and it is a constant conscious effort . I still feel barely afloat .
Promised myself an electric assist beach cruiser bike when this was over, then developed dizziness. Hormone based for sure but I also know it’s from years of caregiver stress. I said to myself, right, that’s more than enough sacrifices ….to hecka with it….so yesterday I ordered the bike! One can pick colors for the bike so I set out to make it look like a duck. This was the best self created problem ever. Spent some evening free time looking up mallards and playing with colors.
Not the most fiscally responsible move but if I’m dizzy I can still run some errands with panache. I figure how bad can the day be overall if I’m riding a duck bike. First thing I’m going to do with it is ride to the store, buy flowers, a bottle of wine, and a baguette, and stick it in the front basket for the ride home.
My future vision was riding a beach cruiser around a village but with the stress related issues I’m keeping my promise early.
So yes fresh air and a bike that looks like a duck is my depression/ anxiety strategy!
I find that what helps me is acceptance. To just accept her condition as it is, as the new normal. I really try not to think of her as she used to be, and deal with things as they are now.
I also find that I need to talk about my experiences: such as a crazy messy code brown and how I dealt with it, or the time Mom used my braid as a rope to pull herself up when I was changing her. Not many people want to hear about that stuff! But my partner who lives here with me listens and that support is what I need. He also helps take care of me by doing all kinds of household chores and doing things for me. He's not hands on with my mom, but his taking care of me is keeping me going.
This forum is another place where people listen and understand and are very supportive. It has really helped me feel less anxious, and I've also gotten so much practical advice. I think knowing what you're doing and feeling competent at it, even when times are depressing, helps with anxiety. At least it does for me.
doing the care out of your own love and not requiring any thanks ( that they can’t give) often they fight you because they deny they are older and not as capable.
Always prioritize taking breaks for yourself. Seriously you can’t deplete yourself and People with illnesses often pull you under with them .especially remember you are not trained as a nurse or doctor . If the work gets too hard - have a plan before it gets to that point . Search for allies- aging program resources, churches, volunteer services, meals in wheels and hospice.
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.
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!!!!!
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!!!
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!
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!
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.
i fell down? i get up again.
fall down 7 times, stand up 8.
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.
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.