Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Lord knows you have enough reasons to feel the way you do but maybe you ARE depressed, clinically depressed. So many people on the forum have been or continue to be on medication or in therapy and have mentioned how helpful it is, perhaps you should talk to your doctor about this.
Helpful Answer (34)
Report

I know what it feels like to burn out and believe me you are there. You need time away. Go for at least a week. Do it for your own survival.
Helpful Answer (30)
Report

I don't have answers or suggestions. I just want to give you a big virtual {{{hug}}}. What you're going through would knock anyone to their knees. I am so sorry you and your family have to go through this suffering. {{{Hugs}}}
Helpful Answer (27)
Report

My heart goes out to you. ((Hug)) I wish I could wave a magic wand over your head and make it all better. I am very concerned about both your mental and physical health. Talk to your doctor to see if he/she can give you something for your physical health. Show your doctor this post, perhaps someone in your doctor's office has some ideas. As far as your finances are concerned, I wish I had an answer. Is there a social worker who can help you with perhaps some new suggestions that you haven't thought about. If you haven't already done so, call your County Office on Aging, or perhaps your church if you have one, maybe someone there can help with financial advice. ((((MANY HUGS)))).
Helpful Answer (16)
Report

When I feel like this all
can’t be real, and I read what I’ve written I feel like I’m reading a story about some poor schmuck in a Woody Allen movie. I look at it and it hits me, that it’s really true, this is really the way things are now. Sort of like an out of body experience.

I’ve told my wife and daughter that I’m taking off for 5 days fishing. I don’t really care if I fish or not, I just need a change of perspective. Daughter has been wanting me to take off, while wife just becomes silent. Not angry, just withdrawn.
I am taking an anti anxiety Med, but maybe I should try something else.
Lack of sleep really is deadly. I need sleep.
The $’s we have would be ok if we didn’t have 2 households to support. Of course hers is pretty steep even though it’s not expensive by standards. Im absolutely burnt out. Even I know it, it just seems to be a constant. I just try to block it out, but of course that’s counterproductive.
More then anything though, I gain some degree of hope from all of you people whose thoughts and suggestions I respect. People who are there, or have been there and take the time to offer up their advice. It does help and I appreciate it.
Helpful Answer (28)
Report

Go and enjoy yourself. I am so happy for you that you can get away for five days, whether you fish or not. Just being able to sleep is so worth it. Turn off your phone, step away from social media and tell people to contact you only if there's a nuclear war. Otherwise, everything can await your return. This is a marathon and not a sprint and you are taking some time for yourself so you can stay in the game. Let us know how it goes.
Helpful Answer (19)
Report

Great that you are getting away for a few days!

Let us hear from you when you return.
Helpful Answer (8)
Report

Absolutely, you need a BREAK from all this. You are valuable and worthwhile, even when you aren't caregiving or earning money or DOING anything. Let us know how you feel when you get back. We care!
Helpful Answer (13)
Report

Dear Istuscany,

Please know you are not alone. I hope the fishing trip and time away will help. I know its not easy. Keep talking it out with us. And know there are always options. I know it doesn't feel like sometimes but there are. Keep hanging on.
Helpful Answer (12)
Report

Why not join a church group or go to support groups available for families? The more you see that there are others that actually experience the same mental and physical issues you do makes it mentally easier for you. Also in these groups you learn what you can do to get help in financial as well as mental and physical.
Helpful Answer (8)
Report

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. What gets me through each day is doing little things for myself, even if a good cup of coffee and watching the birds. I think little good things add up. Sometimes it is all I have. I hope you can get some respite and support during this time. Wishing well for you and much strength, {{HUGS}}, Katie.
Helpful Answer (13)
Report

I am so sorry for what you are going through! I can relate somewhat. I lost all family at once. Brither passed and his wife and I had fallout. She told my brother she was "responsible" for mom before he died.. She told him what he wanted to hear so he would leave all money to her. Told me he was leaving money for mom and we never got a penny and she never came and picked up mom even though I told her I would have her dressed and ready. She did not want to give me 24 hr notice, which I requested. So I left my job early , had limited funds and no fsmily to help. I am telling you this to let you know how much anger I had and was absolutely alone. Tried caregivers support but never went back because I had so much anger and depression. I felt none of them were like me --- no family and limited funds. I ended up going to psychiatrist and getting anti depressants, because, like you, I would wake up every am and it was same thing, panic attacks--- realizing I was alone and what to do. One christmas I was sitting in hallway floor with mom here and crying. I had one good friend who helped, but had to make medical decisions on my own. Please realize you have some emotional support with family and child who loves you! I eventually found wonderful nonprofit daycare for 2.50 a day. This enabled me to take nap or grocery shopping,etc. I learned to take it one day at a time---very hard to do. Try to enjoy your child and family some. Realize you are doing best you can.no, people cannot relate unless they have been there. Mom passed little over year now and I miss her terribly. Do see about antidepressants temporarily to get you thru and take some time just for you. Anita
Helpful Answer (6)
Report

It is ok to say you are BOTH angry and depressed, as would be expected for anyone in your situation! The very support systems that are there to help make the situation all that more difficult, but there is virtually nothing you can do, which supports this vicious cycle. Been there, done that. I would like to tell you-it does get better. There WILL be a day. Until then, like someone else said, gaze at what you DO have in your life: focus on the things, the tiny, little things, that ARE good. A warm sunny day, the smell of a flower, the breeze... sometimes you have to really peel the onion to find those little gems that make life worthwhile. They are ALWAYS there, but not always obvious. Look at the situation from a different perspective, if only for a minute--you love your wife, that is obvious. And I am sure she loves you. How grateful she must be to have a loving CG in you! What a blessing that she has a home where she can be cared for. Yes, it is not ideal; others have it SO much worse! Try to shift your thoughts, even for a second, to all the blessings you do have. Write them down in a notebook each time you have a few minutes while you sit with your wife. They will become not only a lifeline for you, but a treasure to reflect on in the future. Keep in touch in this forum, it is one of the many blessings you do have! There are real people here who have been or are going through this very same thing and you are supported and understood here.
Helpful Answer (8)
Report

Please see your doctor and if you can a therapist that can listen objectively and support you. An antidepressant might be needed to get you over your feelings of hopelessness. I too have felt like things would never get better and wanted to run away. I finally did plan a short trip for just me and it was a nice tonic. However you need to think "what happens when I’m back home? How will I cope?" I found a therapist, I began planning one thing a day just for me to bring joy. Even if it meant going out for a coffee or a movie. I tried to look for small things to bring me a smile like seeing my cat sleeping in the sun. I know as a woman, I’m more likely to have friends...many men do not. But if you can ask a friend to have coffee, go fish with or something. It is not unusual to be angry. But you may be having what is now called compassion fatigue. I read your post as a cry for help. Know that we care about you but please see someone there who can help sort things out with you.
Helpful Answer (8)
Report

I hope you find some peace and happiness ,have some fun on your fishing trip ! Take care , Hugs !!
Helpful Answer (3)
Report

I do as much cycling as I can. Inexpensive, low impact. I call it cycle-therapy. Try it. You will be surprised how much better you will feel. Good luck. "Directness of purpose, self reliance and simplicity of life."
Helpful Answer (5)
Report

I just want to let you know I understand and your not alone, I struggle with the same feelings daily, I don't have an answer, I just wake up and take it day by day, sometimes I feel stronger than others, then times I want to collapse on a floor and breakdown. It is care giver burnout for sure, only those that go through this understand, your right others don't want to hear about it. This is a very isolating existence.
Helpful Answer (2)
Report

" It’s so much harder when you can’t see the way out. "
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
Helpful Answer (3)
Report

Anger can be a symptom of depression. You would serve yourself well to discuss this with your doctor and to get input and advice from the elder/aging agencies in your state. Enjoy your "fishing" days away, and keep us posted through this forum. You are not alone. Feel our support and hugs.
Helpful Answer (3)
Report

Lots of great ideas given to help you. We all understand as we are going through the same thing - to some degree. The best that have helped me:
-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.
Helpful Answer (2)
Report

When you get back from your 5 day trip, please arrange some ongoing respite care - at least once a week (daily would be better if that's possible) - and use the time to care for yourself. Support group meeting, some sort of physical therapy, take a walk, enjoy a restaurant meal, a class on some topic of interest, or even just time to catch up on your sleep. Second, see if you can get someone else on board to help you battle Medicare and research other care giving assistance - maybe your daughter, maybe other family/neighbor, or a social worker. A shared burden is a reduced burden, even just having someone to talk about specific problems like getting the mattress helps a lot with reducing that alone feeling. God bless you.
Helpful Answer (2)
Report

I'm with meima1955. Exercise is so beneficial! You have been and are in a circumstance, where you have had to place your family's needs over your own....for a long time. I hope that your overall health is good. While you're away, make sure that you get plenty of sunshine, fresh air, and exercise (within whatever physical limitations you might have). Exercise is a great stress reducer and it will help with your sleep issues and could work better than any pill! Just start easy so the exercise isn't another form of stress. While you're away for your rest and relaxation, try to come up with a short list of activities that might work to de-stress you upon your return home. Try to initiate and develop positive, "forward" thinking but make your goals small and achievable. You deserve this.
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.
Helpful Answer (1)
Report

How blessed you are that your daughter is offering some respite for you! My family members never have offered to help with my mother's care. You are much more generous than I am: I teeter between hating them and loving them. My mother lives at home, and I understand how your own health is affected by caring for someone whose body is failing them. I cannot get away either, and I do not have any money problems! I learned quite a while ago that no one was going to relieve me or rescue me. So I do what I have to do to take care of my elderly mother, I'm 63, she is 91. I learned to do pretty much what I want to do each day, I learned to be selfishly loving toward myself. Whether it's a hamburger, a massage, a loving puppy to love; I learned to care for me, too. It is okay to think of yourself because you matter, too.
Helpful Answer (4)
Report

Your message touched me, Matt. I had a different caregiving situation, caring for my Dad as sole caregiver in my home. Yet your description of caregiving ‘life’ sounds so familiar, right down to fighting the medical red tape for a hospital bed. Every day its something else.

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.
Helpful Answer (5)
Report

Your story is heartbreaking, as are so many that we all tell and share. There is so little we can offer in the way of counseling or good advice, but we can offer compassion and understanding. My story is very different, yet very much the same-the loss of my gentle and loving husband to dementia, turning me into a stranger to him who he despises. The questioning looks and comments when his family does come to visit and he behaves so well "has a good day" until they walk away a few hours later, our non-existent finances and bleek future. Life has definitely not always been easy, but it was a good one with happy memories until this hit. And so pleases keep posting here and know that though we too are strangers, that we care. No sage advice, just shared experience.
Helpful Answer (5)
Report

I know how yo feel. I'm just starting this journey with my mother and everyday brings new demands and frustration not to mention worry.

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.
Helpful Answer (4)
Report

You are not alone and great advice given as usual there are days I look at my life and I laugh because you cannot make this stuff up and then it seems like it’s all I talk about when I am with my husband he is getting a little upset because he sees how it’s consuming me yet I don’t know if i just need to vent or am I just not thinking about anything else. But I cannot keep it in I am on antidepressants and anti anxiety medication and I do feel so isolated when I am staying at my moms house even though she is at the nursing home and then I come home and I am on the couch for two days I finally got to an aa meeting and it was great to see everyone I know I isolate from my friend when I am down there because she will get on my case but she has the money to put her mom in assisted living or a great family that works together she is married to a lawyer I am married to a cop and my brother is non existent and just stresses me out more my mom and I get along great and then I have my father in law who will be moving in with us and then if my mom comes up we are going to be on top of each other and I worry about my mom being alone she has been so depressed after my daddy passed away but she is so happy at the nursing home for rehabilitation but between my mom and my brother I don’t know what to believe they both lie and they both vent to me so I am in the middle I did defend my mom about lottery tickets because she told me she didn’t buy them anymore but my brother said she was well I found a whole stack of them they both lie about money but she with me doing her bills she is coming clean with me but I am like you I read what I wrote and I don’t believe it we had an amazing vacation in the Bahamas but as soon as we landed it all started as I feet hit the ground so I don’t know where I am at this may sound awful I know when this will all stop is when someone passes and I don’t want that I feel guilty for even thinking about that I can’t imagine my life without her or even my father in law and then my dog almost died and then she is 11 1/2 she is my rock I feel like I want to cry and then I feel like I am just watching myself go through life so you are not alone do you journal at all this can be a great coping skill god bless you for all you do I know your wife is so grateful and very worried about you too
Helpful Answer (1)
Report

I am beginning to feel the way you do but you have opened my eyes that there are others a lot worse than my small problems. The only thing that keeps me going is my faith and sometimes that even wears thin. I will pray for you that there will be a ray of sunshine in your life. I have no answers for you as well as a lot of us caregivers out there who have problems that seem to be heaped on our shoulders. I applaud you for hanging in there.
Helpful Answer (3)
Report

First off, you need to sit down and breathe deeply for a few minutes.

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.
Helpful Answer (3)
Report

Everyone else has better suggestions than I do. I just want to tell you I have great empathy for you, your wife and daughter. Your story made me cry.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter