I got thrust into caregiving 5 years ago by the convalescent hospital staff. I was scared to care for my husband post stroke; however, the hospital staff assured me they would train me. They missed teaching me everything. I felt worthless and scared. I cry a lot. I got diagnosed as having situational depression. 5 years later, I'm angry, resentful, and lonely as H*LL. It is inappropriate to talk to my kids and my friends all have well spouses so they don't understand. Does anyone relate? I feel so alone!
I feel that I am alone, even with her in the house with me. No one to talk with. Neighbors only wave now. Haven't heard from any former co-workers in nearly eight years.
The only person I can talk with is my younger brother 2K miles away and he really isn't much help. Three nephews that I never hear from and a niece I don't want to hear from.
Other than a few videos of Teepa Snow, no training. Always get good grades wishes from the DRs. and nurses, every three to six months.
Just wondering if you may have tried to locate any support groups in your area? Many are or can be very helpful.
Have you ever hired anyone to tend to your LO while you take a day off? Or looked for volunteers in your area that might be available.
This is a rough and usually a thankless job.
I wish you the best .
can they offer some support for you and give you a little time off? have you checked your local aging and adult services to see if they can offer you any help/services?
hopefully you will get more responses keep checking back.
You may feel lonely, but you're not alone. We have each other!
Let's start a discussion thread about any and everything. We can talk about what we are thinking, feeling and doing. Any random stuff that drops in our heads. Big stuff, little stuff, links to good videos, funny ones, informative ones, silly ones, funny animals, or whatever. Random thoughts, questions about anything, like how to get rid of an opossum in my yard? Grrr......Cooking, hobbies, movies, jokes etc....
I think it will be fun!
* Caregivers Coffee Break*
Mamabear...I am right there with you. When my honey first had his strokes I had to keep hold of his jacket when we were out or he would have stepped out in front of a car ...like a three year old. After 13 years he is at about age 16-18 (he is 66). At first I grieved the loss (where he could not see or hear it) of the man I fell in love with but steeled myself for the long haul. All went along pretty well even with his heart issues until last November. I began to feel lonely as we could not talk even as we had after his strokes. Everything set him off. By February (after his surgery to replace his defibulator with a combined pacemaker/defibulator) he had become verbally abusive and downright mean. (not physically). I have never felt so alone though he is here at home now. I do not want to be around him as after he threatened me physically while he was rehab it made me wary and not as open. I have learned to put a barrier up though he is not verbally abusive any more...just snarky occasionally. It is hard to battle the loneliness. Coming here to this forum has been my life saver. Today he told me not to make any appointments for his care without his say so... he said he has a say in it. Yes he does, so next time his providers call to make an appointment I am going to hand the phone to him and let him deal with it. Don't think that will work out well with him doing it but oh well...._____ happens. We have no family close and I hesitate to talk to my daughter who has more on her plate than she can handle. When things were at its worst I did clue my honey's brother and SIL (they are like a brother and sister to me too) to what was going on. They try to come up once a month now. But cannot talk to them with honey around as though he swears he has hearing issues, he can hear every word I say even if I am on the other end of the house. Ugh.
Pepsee...great idea on the discussion thread about any and everything. Please let me know when it is started (and I will watch for it).... sounds fun!
*Caregivers Coffee Break*❤️
I am recently going through the same issue of feeling lonely which causes severe bouts of depression accompanied with caregiver burn out which often turns into reoccuring episodes of extreme isolation and existential crisis. (interestingly enough, I recently posted a question revolving around this topic.) Generally the way I would normally cope involves tons of smoking American Spirits menthols and listening to hours and hours of music. being outside at night in the dark helps me to sink into something else in a way, something positive and deep. This also influences my creative insight and causes me to start my drawings, write, and read into my books harder. I am also currently looking for an option for school as I am 22 and want the chance to further myself in my life.
by Kari Jobe
When I walk through deep waters
I know that You will be with me
When I'm standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
I am not alone
I am not alone
You will go before me
You will never leave me
In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
Oh, and I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
I am not alone
I am not alone
You will go before me
You will never leave me
You amaze me
Redeem me
You call me as Your own
You amaze me
Redeem me
You call me as Your own
You're my strength
Although I am no longer caregiving as my mother died from Alzheimer's here at home, I completely relate to what you are going through. There is no cure but there can be momentary relief. These include going to whatever appropriate support groups you can find and with which you can relate. All the ones I know of meet monthly but on different days. Become a regular at a coffee shop and talk to other people. Call your local Area Agency on Aging and get a social worker you can talk to. They do have some mental health services for younger people and this is your mental health on the line.
I have no idea how old you are, but I'm guessing you are young because you say it is not appropriate to talk to your children. If they are adults, I don't understand that because after all they are family, but if they are still children, that could make things seem even more isolating.
And of course you can spend time here and get a lot of support.
Good luck.
I cared for him here. The others were in facilities.
My friends don't understand therefore they leave me out of invites because I can not attend them.
What I do to keep my spirits up is get into a hobby. Work out on my Pilates machine because you have to be strong in the mind and body to take care of love ones. I pamper myself by purchasing things like an adjustable bed, one for mother and one for me. Read magazines, take soaking baths. Eat healthier foods by adding more fruit and veggies to my daily meals.
Find your joy...no one can do that for you. If taking care of a love one is the situation you are in at the moment remember...its only for a moment. It may seem like a life time so change your thinking. Stay positive. Wake up and feel good about your day. We all have choices, make yours a good one.
It's me again. I just realized why you feel it is inappropriate to talk to your kids about how you're feeling. You're caring for their Dad and I'm sure they don't want to hear you gripe or complain.
I get it. My youngest son will be 20 on Friday, he absolutely catches an attitude with me if I even make a face or show any signs of impatience with my Mom. He and I can talk about anything openly, from sex to the stars in the sky. But don't say one negative word about his Meema. Lol.
Hang in there!! 💜
Even young children are tuned into emotions, stress, anger, fear. If these are not explained they can be confusing. If the kids are older they should also be included in conversations about what is going on. And you can ask the kids for help even young ones.
You need to find a support group.
Another call you should make is to your husbands doctor and ask for a physical therapist to make a home visit to assess what you can do, what you're doing properly and what needs more instruction.
A few questions for you..
Is your Husband a Vet? The VA may be able to provide support as well.
Does you husband have other medical conditions? Is it possible that he would be eligible for Hospice? You would get support from a CNA as well as a Nurse, social worker and if you need a volunteer that would come in on a regular basis so you can get out for a bit of time by yourself. It is worth a phone call...
If you have EVER had anyone say.."if there is anything I can do let me know"....you need to say something.
People want to help but they don't know what to do unless you tell them,
Next time someone utters those words say..
Ya know I really need a gallon of milk and a dozen eggs next time you are at the store.
I really need someone to talk to would you mind stopping for a cup of coffee Wednesday morning, I have time around 11:00, I need to catch up with whats going on.
I have a Doctors appointment on Thursday at 3, could you sit with Bob for a bit, he loves watching Jeopardy I should be home by the time the News comes on. (Tell people that they would not have to do any direct care, just talk, read the paper, watch TV...)
And if you don't have a Caregiver it is time to hire one. Delegate some of the work. You might only need someone for 2 hours 3 days a week or you might need more but even 2 hours is an immense help.
Another doctor call to make is to your doctor. Make sure your doctor is aware of what is going on, your emotional state and how you are feeling. If you need or even if you don't think you need it as if seeing a Therapist might be helpful. Always good to get the opinion of someone else. No harm or shame in getting a little pharmaceutical help if it is needed. (antidepressants or anti-anxiety medications can help even if the unopened bottle is there "in case you need it" ...{I can tell you I took 2 pills from the bottle and just knowing it was there helped} )
Isaiah 41:10
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."
Second suggestion: force yourself to take up a craft that you can do at home, and that has an active craft group locally. Ask for advice on how to get started, books to teach you at home, what gear you need, choices that are easy (my personal advice is don’t start on painting, it’s too hard). If you can make the contact, many craft groups have people who are not so house-bound. They may have one or two members who will visit you occasionally to see what you have been doing, and show you their own work. It will be more enjoyable for them and for you than being focussed on the (very real) difficulties you have all the time.
And yes, have something ready if someone says “if there’s anything I can do just let me know”! Best of luck.
First off, how are YOU today? Did you take care of yourself today? I hope so.
I am also a fellow caregiver, I take care of my dad. I understand well and fair how lonely it can be. I understand stressful and worrisome.
What the hospital did to you, was not right at all. However, some hospital offer classes. If you still want them, also a quick online search.
Another thing is, I agree with you it is inappropriate to talk to your children, especially since you are taking care of their dad. As someone, who was a parent's counselor - it isn't a good situation for a child to be in. So, please don't do that. However, you should consult in your friends or seek a local support group.
Have you talked to your doctor about your situational depression - see what more they can do fore you.
I hope you are well, please take care of yourself.
Ana
i kept most everything to myself but I do remember being frustrated and my eldest son wanting to be 18 so he could put his father in a home.
I have to disagree with not talking to the kids.
I have mentioned here several times my Mom died when I was pretty young, 11 years old. NEVER did the family have a discussion as to what was wrong, cancer, how serious it was, very, and what would happen. As an 11 year old (my sister is 2 years younger than I am) I have a very vivid recollection seeing my Mom walk out of the house for the last time..She had a towel over her face and she was vomiting. We went to school that day and she went into the hospital. We could not go see her, children were not allowed in the hospital "way back when". We could stand at a certain point in the parking lot and we could almost see her waving from some window way up high. Was it her?..I will never know...
My Dad got sick a few years later and again never discussed it or what would happen to the two of us. He died 4 years after my Mom.
Very confusing times for my sister and me.
Would things have been easier if things were discussed? Probably.
After my Mom died we did have Grandma living with us but she also was ill. We, Dad, my sister and I took care of her. At least we did the best we could as kids but we learned a lot watching my Dad care for her. We learned compassion, caring for family, we learned a strength that I do not think we would have developed if it were not for the circumstances in our lives during this time.
I learned as a 12 year old how to put a meal on the table between the time I got home and playing out side for a bit.
I learned how to fold a fitted sheet of any size by myself. (You would not believe how many caregivers I had to teach that little skill)
So I stand by the advice to talk to the kids. No matter their age. But yes be aware of the age and what they can handle. They know something is going on. Knowledge is better by far than what we may fear.
Just like a talk about sex ...tell them what they need to know and tell them what they need to know when they need the information.
And if the "kids" are older they should be kept informed.
I too, learned at 12 how to put a meal on the table. I'm only sixteen now, so I understand how much of a struggle it is.
I didn't mean not to keep the children informed, of course they should know what's going on, how they're father is, and how they can help if old enough. What I meant is don't let the children be a counselor.
I agree, that depending on their age they should help. Whether its cooking, or running an errands if old enough. Even if they just stay home with dad for a while so that CrazyMamaBear is able to get out.
I didn't mean for them to not be in the know, for them to just be clueless about the scenario. Just that, they shouldn't be their mother or father's counselor.
Sorry for any confusion,
Ana
I spent years caring for my mother at home and now in a nursing home, although I always considered her a good friend losing her to dementia can not compare to the heartache you must feel having lost your spouse, helpmate, other half. No, outsiders can never understand how completely your days and thoughts are bound up with the needs of someone else, only those who have been there can understand. Welcome to AgingCare, we are a group of individuals from around the world and from many walks of life but we are all caregivers willing to listen, support and befriend those like you who reach out.
Thanks for your response and you are right that kids should not be a "therapist or counselor" to a parent, grandparent or any other adult.
And at 16 I bet it drives you nuts how "immature" some kids your own age are. Just know that you will take the lessons you are learning now and be a better person because of them
Hang in there.