You try and maintain your identity by taking time out to do things that you enjoy and by making yourself a priority as well as your wife. Yes both can be done. You may not get as much time away as you'd like, but any time away when you're a caregiver is priceless. So make sure you're hiring some outside help to come in to give you a break, or have family members or volunteers from your church or elsewhere to give you breaks, and then get out and do the fun things you enjoy. While I was caring for my bedridden husband, just being able to go to the grocery store and take my time was often just the break I needed. Otherwise meeting a friend for lunch or supper, taking a walk through my neighborhood or just sitting outside on my patio with a glass of wine was enough to rejuvenate my soul so that I was able to continue on this journey with my husband, and not lose me in the process. The important thing to remember is that you matter too, and that you MUST take and make time for yourself. It is then and only then when you will be able to maintain your identity.
While I wasn't a hands-on caregiver for my father I was in charge of managing his life. When I took him to family events I was treated as if I was his caregiver and not an actual family member.
Once my father received an invitation to a family event that I did not get invited to. He insisted I call and ask where my invite was which I shot down and refused. He badgered me about that for quite a while but I held my boundary. He wasn't upset I was 'snubbed' by the family he was upset he had no easy ride to the event. I posted this situation to an etiquette forum I was on and was shocked at the number of people who thought I should drive him 90 minutes to the event and then wait around for hours while he is there to drive him home. You lose your identity when you are caring for an elder. It is like you are invisible. The ending of the story was he got my cousin to take him and had no appreciation for the time it took for him to do that. After that, they made a point of inviting me to things he was. I felt like I only got the invite because they found out how difficult it was to have to be his chauffeur and babysitter. I didn't accept too many invitations after that.
U did right. It didn’t make since only inviting in. U did not have to sit around and wait. I would have came any way with my dad snd if they said anything I would say dad we have to work as a team u stick up for me bc I’m helping u. If they treat me funny then u ask what’s the problem to them. U did right and now they see. Even so, I would go but if they r miss treating u I would stop going and send dad with someone else and that would be my free time.
I AM my mothers keeper even though she is in a beautiful assisted living facility. Always lots of chores to be done when you are the POA and the go to gal. I also feel I have lost me. It is always about mom. Her needs, upsets or staff issues. Usually the first thing someone asks me is “how is your mom?”. Not sure there is a way to feel our own identity fully..I have tried counseling, support groups, activities with friends, cutting visiting to 3 days a week.…and self care.. I engage in exercise daily..I get 2 very short get aways a year but it always goes back to what I am. You return to same issues. I am hoping when this job ends there will be time left to enjoy retirement! Hope!!
I hear you. On the rare occasion that I am having a good day, it is broken up when someone asks, "How is your wife?". Then I have to relive the pain of watching her slip away. I have asked people to stop asking about her since the answer is always the same. She is steadily going downhill and she will die so there is no reason to ask.
Is her age 60 correct? This is so young to be getting Dementia but it happens.
Whether your a husband or a wife caregiving is hard. Its having to be on your toes 24/7, with probably no sleep. Yes this is the "worse" of the "better or worse" but its hard for any one person.
I knew a woman from Church thats husband had ALS. She was an RN and kept her husband home. She was retired. She was able to get out because neighbors would sit with him so she could go to Church, run errands, etc. Thats what you need to do. Even if you can only afford a few hours a week, get someone in. Just having someone bathe my Mom was a big help. When I placed Mom in an AL, I got the best sleep I had in 20 months.
Its OK to place your wife if things are getting too much. Its so much nicer to have others do the hard work and you be able to sit and enjoy the time you have with a LO. You don't have to be there every day for hours. Its not giving up, its getting help you need. It takes a Village.
You can have your assets split and her split goes towards her care and then Medicaid can be applied for. An Elder Lawyer can help you set this up.
You're stuck with that perception. During the counseling and vetting that accompanied my first family caregiving job, I heard the words from a social worker: “your past life (meaning my satisfying career) is over. You’re a caregiver now.” Yup. She actually said that to me.
This is a wonderful question. I could so relate to this. I wish I or someone else would have asked this question during my caregiving journey.
My husband passed in July, 2021 after twelve years of care. I'll turn 70 this month. After the emotional let down of 'losing my 24/7 job', getting everything done, and being able to get out and about after covid, I'm asking the question - who am I and what do I want to do with the rest of my life. Does anyone else feel this way? Actually, maybe this should be entered as a new question.
It is easy to lose your identity when one is a full-time caregiver.
Me, I am not in favor of home care after a certain point, meaning timeframe. If it goes on and on, I would make the decision to place the LO in a home.
I will only give up so much of my life for another, I don't consider it selfish, I consider it fair.
Caretaking is exhausting and will affect both your mental & physical health.
Might be time to consider another option for her care.
Did you ever notice, often when one becomes a mother she is treated as just that and nothing more? Someone to change and feed a baby without interests of her own? Unpaid servant in spite of loving her child. Yours is a very complicated question. I recall the first time someone referred to me as a caregiver. Internally, I shouted “No, no, he takes care of me.” He always did. What I think is missing in this conversation is the fact that becoming a caregiver completely changes the relationship with the person cared for. You lose that person. One can feel the grief. It is lonely not to have them in their full personality and to merely sustain them as you would a small child who, this time, will not grow up. And so caregiving can be a job no matter how lovingly you administer to that person’s needs or how grateful you are for what was. But what about that reciprocity that once existed? They can no longer give to you. The relationship has been turned on it’s head. You can no longer have deep, meaningful conversations, shared memories that bring laughter, vacations together, decisions to be made, dinners out. You do lose “yourself-with-the other” as the relationship was. Just as when someone dies, a part of you dies and going out with friends etc. doesn’t take away the pain of the losing yourself as you were with that person. And as you care for that person, you are in a state of chronic mourning for the relationship—“You-with-other” is gone. Your life shrinks and so you are defined by your job, “Caregiver”. And some of us can get additional help with that job in order to redefine ourselves from time to time but deep inside, we now define ourselves as the as “The Primary care giver” even if the loved one is in a nursing home. And that my friends, is a heavy title to hold which may leave no room for another.
WOW. You nailed it. Caring for a person with Alzheimer's is like child rearing in reverse. Like child rearing, that person is always your responsibility no matter who is helping or what facility they are in. I know that if our situation was reversed my wife would do whatever is necessary to see that I was cared for and I will do the same for her.
I think in life there are Seasons. Caregiving is one of them. Haven't we all had our happy times, hopping on a plane, go to school, out for lunch with friends.
But sometimes in life, duties calls and you can't leave your command post.
Caregiving is nothing new. Look all the old western movies--my Lord what they could do with a shot of whiskey and table is amazing.
We've come a long way baby--I am trying to make you laugh. On a positive note folks we have more help now than ever--physical therapy on every corner, a specialist for everything, etc.
What has changed is the family demographics-the high divorce rate, both couples working, blended families and not everyone has a Church affiliation.
The neighborhoods are not like when I grew up...everyone knew one another.
Usually the women take on the caregivers role. I think it's harder for men but there are some wonderful men out there who truly took their vows seriously
It's not easy caregiving but if you can carve out a happy place seek it out. I like hershey bars, the pool and reading. I am a believer and I ask for God's grace every morning to do His will.
I will pray for you. There are a lot of wonderful people on this forum who have insight and look forward to the Saturday update.
You are in my prayers...bring services in, get yourself a good pair sneakers and go for a walk around the block. It's amazing how life changes after a stroll!
Officially diagnosed in 2009. Caregiver since 2007. Fifteen years in, I'm only now throwing up my hands. I can't do this alone any more. As of Nov 1 my husband will be attending an adult memory care day center.
I haven't been who I was for so long I don't know what to do, where to begin, and how to find that person.
For my husband's b'day today I took my husband to Occoquan for a special lunch and then a stroll through the old Workhouse, a former prison, now artists studios. One of the many studio's was rented by a woman with whom I use to attend art classes 15 years ago. She was not in but I saw her work. She was very talented but in the last 15 years she not only developed and perfected her unique style she never stopped attending classes which was my dream and plan. She is not only talented but her bio by the door of her studio showed having studied in Europe as well. About 4 years ago I gave up hope and packed away my easels, brushes, etc as well as sculpting tools that I hadn't used in 8 years. There is no way that a person can yoyo in and out of the "zone" to be on call to feed, wash and clean up messes. I wasn't that great but it made me happy. It was my thing. In fact I lost my desire now. In my life I've known two people who have dedicated themselves to honing their skills to the exclusion of having a family. That's kind of what I'm doing. I take care of my husband to the exclusion of having family, friends, a life and art classes. Truly I'm over that but I still desire a life but I don't know what that looks like. I think once on my own I'd like to sell everything, live close to being a minimalist hobbit, and maybe just whittle.
My husband was destined to need someone. I was chosen by the universe.
Maybe you can read, watch YouTube lectures on subjects that interest you. Learn someone solitary like the banjo or harmonica. Stay sharp on a subject you like and current events to be able to hold conversations. Make an effort to invite people to lunch. Also you, or a deli, can make a picnic basket and ask another couple to do the same and you'll meet them at a park. Hire a young adult cousin or a CNA aid from an agency to come along for a couple of hours.
As for myself, since I know that this is not forever and I might move after this episode is over, and if my husband passes before I do, I'm currently slowly going through the house and closets and I'm getting rid of unused items. So far two tables a desk, some shoes, clothes and more. Even if I die first it'll make things easier on the successor trustee.
Who cares how people identify you. Where are these people when you need them? Who were you before? Maybe you didn't loose your identity. Maybe you added to it.
I am touched by the line, "Maybe you didn't lose your identity. Maybe you added to it." You have given me a different perspective to consider. Thank you.
So make sure you're hiring some outside help to come in to give you a break, or have family members or volunteers from your church or elsewhere to give you breaks, and then get out and do the fun things you enjoy.
While I was caring for my bedridden husband, just being able to go to the grocery store and take my time was often just the break I needed. Otherwise meeting a friend for lunch or supper, taking a walk through my neighborhood or just sitting outside on my patio with a glass of wine was enough to rejuvenate my soul so that I was able to continue on this journey with my husband, and not lose me in the process.
The important thing to remember is that you matter too, and that you MUST take and make time for yourself. It is then and only then when you will be able to maintain your identity.
Once my father received an invitation to a family event that I did not get invited to. He insisted I call and ask where my invite was which I shot down and refused. He badgered me about that for quite a while but I held my boundary. He wasn't upset I was 'snubbed' by the family he was upset he had no easy ride to the event. I posted this situation to an etiquette forum I was on and was shocked at the number of people who thought I should drive him 90 minutes to the event and then wait around for hours while he is there to drive him home. You lose your identity when you are caring for an elder. It is like you are invisible. The ending of the story was he got my cousin to take him and had no appreciation for the time it took for him to do that. After that, they made a point of inviting me to things he was. I felt like I only got the invite because they found out how difficult it was to have to be his chauffeur and babysitter. I didn't accept too many invitations after that.
Whether your a husband or a wife caregiving is hard. Its having to be on your toes 24/7, with probably no sleep. Yes this is the "worse" of the "better or worse" but its hard for any one person.
I knew a woman from Church thats husband had ALS. She was an RN and kept her husband home. She was retired. She was able to get out because neighbors would sit with him so she could go to Church, run errands, etc. Thats what you need to do. Even if you can only afford a few hours a week, get someone in. Just having someone bathe my Mom was a big help. When I placed Mom in an AL, I got the best sleep I had in 20 months.
Its OK to place your wife if things are getting too much. Its so much nicer to have others do the hard work and you be able to sit and enjoy the time you have with a LO. You don't have to be there every day for hours. Its not giving up, its getting help you need. It takes a Village.
You can have your assets split and her split goes towards her care and then Medicaid can be applied for. An Elder Lawyer can help you set this up.
My husband passed in July, 2021 after twelve years of care. I'll turn 70 this month. After the emotional let down of 'losing my 24/7 job', getting everything done, and being able to get out and about after covid, I'm asking the question - who am I and what do I want to do with the rest of my life. Does anyone else feel this way? Actually, maybe this should be entered as a new question.
Me, I am not in favor of home care after a certain point, meaning timeframe. If it goes on and on, I would make the decision to place the LO in a home.
I will only give up so much of my life for another, I don't consider it selfish, I consider it fair.
Caretaking is exhausting and will affect both your mental & physical health.
Might be time to consider another option for her care.
Sending support your way!
I think in life there are Seasons. Caregiving is one of them. Haven't we all had our happy times, hopping on a plane, go to school, out for lunch with friends.
But sometimes in life, duties calls and you can't leave your command post.
Caregiving is nothing new. Look all the old western movies--my Lord what they could do with a shot of whiskey and table is amazing.
We've come a long way baby--I am trying to make you laugh. On a positive note folks we have more help now than ever--physical therapy on every corner, a specialist for everything, etc.
What has changed is the family demographics-the high divorce rate, both couples working, blended families and not everyone has a Church affiliation.
The neighborhoods are not like when I grew up...everyone knew one another.
Usually the women take on the caregivers role. I think it's harder for men but there are some wonderful men out there who truly took their vows seriously
It's not easy caregiving but if you can carve out a happy place seek it out. I like hershey bars, the pool and reading. I am a believer and I ask for God's grace every morning to do His will.
I will pray for you. There are a lot of wonderful people on this forum who have insight and look forward to the Saturday update.
You are in my prayers...bring services in, get yourself a good pair sneakers and go for a walk around the block. It's amazing how life changes after a stroll!
Fifteen years in, I'm only now throwing up my hands. I can't do this alone any more. As of Nov 1 my husband will be attending an adult memory care day center.
I haven't been who I was for so long I don't know what to do, where to begin, and how to find that person.
For my husband's b'day today I took my husband to Occoquan for a special lunch and then a stroll through the old Workhouse, a former prison, now artists studios. One of the many studio's was rented by a woman with whom I use to attend art classes 15 years ago. She was not in but I saw her work. She was very talented but in the last 15 years she not only developed and perfected her unique style she never stopped attending classes which was my dream and plan. She is not only talented but her bio by the door of her studio showed having studied in Europe as well.
About 4 years ago I gave up hope and packed away my easels, brushes, etc as well as sculpting tools that I hadn't used in 8 years. There is no way that a person can yoyo in and out of the "zone" to be on call to feed, wash and clean up messes. I wasn't that great but it made me happy. It was my thing. In fact I lost my desire now.
In my life I've known two people who have dedicated themselves to honing their skills to the exclusion of having a family. That's kind of what I'm doing. I take care of my husband to the exclusion of having family, friends, a life and art classes. Truly I'm over that but I still desire a life but I don't know what that looks like. I think once on my own I'd like to sell everything, live close to being a minimalist hobbit, and maybe just whittle.
My husband was destined to need someone. I was chosen by the universe.
Maybe you can read, watch YouTube lectures on subjects that interest you. Learn someone solitary like the banjo or harmonica. Stay sharp on a subject you like and current events to be able to hold conversations.
Make an effort to invite people to lunch. Also you, or a deli, can make a picnic basket and ask another couple to do the same and you'll meet them at a park.
Hire a young adult cousin or a CNA aid from an agency to come along for a couple of hours.
As for myself, since I know that this is not forever and I might move after this episode is over, and if my husband passes before I do, I'm currently slowly going through the house and closets and I'm getting rid of unused items. So far two tables a desk, some shoes, clothes and more. Even if I die first it'll make things easier on the successor trustee.
Who cares how people identify you. Where are these people when you need them? Who were you before? Maybe you didn't loose your identity. Maybe you added to it.