It just never ends. Every day I wake up, my battles are always waiting for me. I go to sleep worrying about money, the next days regular fight with Medicare for a mattress, a damn mattress! I fight for more then 4 PT and OT sessions after the IS’s hospital stay. She’s had stage 3 skin breakdown, bed sores etc. When she broke her femur last month in the shower with the CG at our house, I re-damaged my neck and shoulder while knelt down and picked up a soaped up slippery wife from the tile to get her to the ER. After surgery and a steel rod and bolts in her femur, she ended up in CCU in critical condition. Then having the temporary home healthcare, post surgery, at her home being apathetic as they’re in between her obvious needs and the denials Medicare offers. The constant unrelenting progression of her MS, the loneliness of living in my house for years after her move to a board and care, or how alone I was while being the CG for decades before she left. I look at the future of our finances, my job left so many years ago so I could care for her and our then 7 year old, and see more $’s going out then coming in. The physical damage of my back, neck and shoulders and constantly in pain. My only respite was exercise, which hurts too much to do now and my motivation is hard to find. She is loosing her ability to use the power chair. She can’t pivot transfer now as we can only use the Hoyer so her time out of bed is severely limited. She has to use what little strength there is to use her left hand across her body to drive the PChair now, as her right hand is leaving her. Little things, like the car suddenly having a problem today, even though I bring it in regularly, become magnified for me. I go to see her every day and she’s, understandably detached and I see the fear on her face. I look in the mirror and see the wear of stress on my face. There are times when things build up so much, you just can’t think to reason. Things just slow down to a crawl. The little business I tried to start, stopped 10 years ago, even though I’ve kept it open hoping things at home would change somehow. Now I’m in the process of dissolving it. I’m saying all this here as I’m not comfortable getting into the discussion of it, with those who can’t relate, yet seem to have all the, why don’t you try this, answers. Why don’t they try the, this, that I’m trying to hold together. I know I’m not the only one with such issues, I’m just alone with these problems and thoughts and I’ve never been good at asking for help. I don’t even know if there’s help for these issues. It’s so much harder when you can’t see the way out. Even my family can listen to these issues for just so long before even they step back from things and...I understand why they do. At this moment, I’m somewhere between angry and depressed.
I am hoping and praying for your situation. PEACE.
I think there is a misunderstanding on this thread. I don't think you have decided yet to take time for yourself, but maybe I am wrong.
Best wishes to you and will be praying for you. Hope you get to go fishing. Fishing is great if someone baits the hook and takes the fish off. :)
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand."
Is there a trustworthy person (family member, church pastor, etc.,) that could assist you in tackling these issues? Talk in depth with your Dr & or social worker & they should help you navigate the Medicare, PT & OT issues but I do totally understand the battle in that. You may feel alone, but you are not! I am praying that the Lord would sustain and strengthen you in this great difficulty, & in this, would give you His wisdom & a trustworthy helper to come alongside you in this. Above all, take care of yourself in the basics... getting adequate rest and eat nutritiously. Would it help to write down/categorize your problems & also record any possible solutions?This way, you can get organize your thoughts and mark off problems as they're solved. Keep us posted. May the Lord grant you peace in this!
"Your feelings sound so familiar to me. I often would grab my head and say "this can't be happening". I feel sometimes like my life is some sick joke there for some entity's amusement." I had to smile at this because yes, I feel like that too! Some pantheon of spoiled super-beings with nothing better to do than mess with us!!! I even recently said that this all feels like being in the ocean, shoreline in sight, soon to be on the beach for some rest, when along comes a rouge wave that pushes me further out away from the shore!! Sometimes it seems to be a daily occurrence, other times those stupid beings either give us a day of respite or are too focused on messing with someone else!
Although I do not physically care for our mother, I do get ALL the rest of it - bills, finances, arranging/providing transportation to appointments, applying for various benefits/setting up accounts for these, responding to any "crisis" that arises with mom, etc etc etc... Although I was more or less forced into retirement, I am grateful that I do not have to work AND do all this. I am somewhat resentful that all this has fallen to/been taken on by me. There is only so much one can do in a day. Having my own crises to deal with don't help (current financial crunch and unexpected loss of a much loved kitty, along with day-to-day watching over a 19yo who is probably on borrowed time at this point. However, I do not believe younger brother (only other POA) manages his OWN affairs properly, and I cannot see him doing this very well. Older brother does not have POA and is not local (2 days drive away), so that is another challenge.
I do try to just take one day at a time, knowing full well that anything I plan will go to hell within hours of getting up. If something can be done, it will get done. If not, hopefully there will be another day. My "life" and "retirement", as well as the repairs/renovations that are needed in the house I am in, are currently on hold indefinitely. My parents enjoyed their retirement for MANY years before dad finally was put in nursing home by mom, and she was okay at home alone for about 8 years after his passing, still enjoying her life. Other family and friends passed away, then the dementia crept in. Little by little taking care of her needs has taken over my existence.
lstuscany;
So yes, we can all relate at some level to what you are going through. You gave up many years care-giving for multiple family members, and at the least you should look in that mirror and know all those lines you see were well deserved. Someone once told me my scars from surgery are "tattoos of life." So be the wear and tear on your visage. Many family members back off and provide no help at all. You've done your time and then some, so you do need to focus on yourself sometimes now - let some of the rest slide for given times of the day and reflect on what you want out of life. You can still care for others, but you need to set aside time for yourself. As noted before and by yourself, trying to discuss what is going on with others can lead to standoffishness from some others. They cannot relate or make it sound simple to get through things. They shut you out. Try to limit those discussions with those who really do care and can relate, especially here. With those who cannot deal with your need to talk about all that goes on, keep those relationships on neutral topics. You do need those relationships as well, just to take focus off everything else. Focus on common interests, new interests, enjoying time with your daughter, who is a joy in your life!! We never know what each day will bring, so you do need to find time to enjoy anything that does bring a smile to your face. They may be few and far between, but relish them!
I feel a marriage can be ruined by talking and ranting negativity! Hubby gives me synopsis of his week. He allows a bit of crying and pets my head. I shore him up the best I can.
You sound as though you are straining against the weight of your responsibilities for your wife (and for good reason!)
The first thing that came to mind was a bible verse-
1 Peter 5:6
Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time.
Cast all your anxiety on Him because He cares for you.
I think that means give God all your burdens. Ask Him to lift this weight off your shoulders. Then believe it will happen.
I had what felt like a nervous meltdown nearly 2 years ago. This superanxiety came out of nowhere. I tried roughing it out, then went to a therapist who immediately (1session) sent me to a "shrink", who prescribed "zombie pills". I couldn't live without ANY emotion, so I quit taking them. I tried for a follow up for the therapist (just for talk therapy) but couldn't get an appointment for over 4 months!)
Shamefully to say, that's when I turned to God. I asked Him to remove the anxiety and it dissipated.
Let God be on your team.
I'm so happy you're going on your fishing vacation. Let us know what you caught. Hopefully you'll feel renewed.
1. You need to see your family doctor about your stress & depression. There are medications available to you. If you don't want to take drugs, there are herbal remedies; personally I am using Ashwagandha and it's keeping me calm and rested.
2. The power chair: the joystick can and should be changed to the other side. I can't believe no one has mentioned this. All power chairs can have the joystick on either armrest. Depending on how long your wife has had the Power Chair, she could be eligible for a new one now and you need to start the paperwork as it takes longer to be approved by Medicare now. I was told about 2 months after the physician prescribes it. We are today waiting for DH's power chair. I think I read here at AgingCare.com that they are eligible for a new one after 5 years.
3. You should have called 911 to come lift your wife from the shower. I have called on neighbors to help me lift my husband as he too is a "fall risk" and it has reached the point where I can no longer lift him alone. If calling an ambulance is out of the question (due to cost) - you can call the Fire Department and explain the situation and they will come out and lift your loved one. You can still call 911 and explain the problem and they are supposed to be able to make the call to the Fire Department for you.
4. Breathe. Breathe. Breathe.
5. Next time you go to visit your wife, go to the community room and talk with people - women included. You are not the only one to feel the loneliness or have the money worries. Sharing a burden makes it half a burden.
We scrimped and saved for the 33 years we have been married and today I am thankful that we have the little extra $$ to pay for DH's needs. Things like a Lift-Sleep Chair for him and later another for me as I too needed to sleep in the living room with him. He wakes me hourly to void. The Ashwagandha helps me to get back to sleep and to feel rested in the morning.
Before I started the Ashwagandha, I had trouble seeing beyond the stresses of the minute. Like you, the least bit of trouble became blown all out of proportion. Now I take every issue one at a time. So my house has dust-bunnies but I take DH to the bathroom several times a day while he 'tries' to eliminate. So you can write your name in the dust - I take care of my DH's immediate needs and I do it immediately. It all comes down to priorities.
Your #1 priority today is to find out what you need to do to feel better.
I am praying for you - I pray for my own sanity all the time and it helps.
I wish I had a solution for you. I have a daily Yoga practice and that helps a lot. I also walk outside at every opportunity. It doesn't change the circumstances but it does alter my reaction to them.
My Dad had CHF/stroke, so I became a caregiver overnight. No warning. No training. No family. No help.
Please know there are others here who understand. Our situations are all different, but its impacted all our lives, and we feel for you.
This may a crazy idea, but have you considered fostering a dog/cat? I know, I know...you don’t need anything else on the task list. But love/companionship for yourself is also on your list.
As a foster, it can be short term (even a few days) and temporary—you can test out if its right for you while also helping a local animal shelter.
When no one else is there, being able to turn around and hug a dog might just get you through.
Additionally, a couple sessions with a therapist might provide you with some behavioral modification strategies to minimize that visceral feeling of panic upon awakening and some of the other negative physical responses that we all feel when contending with this incredible stress. In other words, adopt a care plan for yourself. You can do this and when something works, it's like an elixir. Take care.
-you MUST take time for yourself to avoid burn-out-remove
yourself from the situation for a day/overnight - and make it your time - keep all thoughts at bay as much as you can - I went to my daughters overnight and stayed off topic as much as I could
-find the good in your day -if you cannot find it, come up with one
-medication for your anxiety and depression at the right dose
-rely on others help to give you a break- take offers when you get them
-continue to us this site as a sounding board - we do understand and don’t get tired of listening (others just don’t understand and get tired of hearing it after awhile)
-have a regimen for yourself of taking a daily walk for exercise to clear your head - make the time!
-breath - when at your worst - remove yourself temporarily and practice deep breathing to calm yourself. I use my FitBit ‘breath’ for 2 or 5 minutes to calm me.
Your own life is in jeopardy, your own health...you will get sick if you don’t take time for your well-being.
Take your needed breaks.
that is exactly the issue, you need to take the anger and turn it into energy to work on how to find a way out. that is what i am doing now myself during my anger/depression with all the crap life puts people through.
start asking how to find a way out of the crap instead of how to stop being angry and depressed, then work on those things and keep busy ... while reminding yourself of the blessings you do have every day