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I've been through it. I took care of my husband and neglected my health and sanity. He passed away last year. My health has gone into the toilet and I'm disabled.

It's hard to go from being spouse to a caregiver. My advice? Take care of you. Make sure you try and have a life outside of the home. Or, if it gets to be too much, don't hesitate to look into nursing homes or assisted living. I don't know how old you are or your wife. It's something to consider.
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All I have to say, and I am brand new to this website and forum, but for all of you "caregivers", I salute you. To me, the absolute definition of love is what you are doing.
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I know the feeling,.. I’m caring for my mum with severe dementia all on my own (no other family whatsoever) and sometimes I simply stare at my wardrobe like “who was that person”, “how do I be her again”. I feel like I’ve completely lost myself. Every now and then the old me tries to surface but is quickly pulled back into the depths when Mum requires assistance or I realise something must be done. I hope that I will find myself again but I don’t even recognise myself when I look in the mirror. I was a bright, bubbly, slim and energetic person who had big dreams and plans. Now, I’m 20kg heavier, live in comfy home clothes 24-7, tired and worn out, brittle hair, my mind is a scramble and my self confidence has hit rock bottom and my job aspects have paused.
I can only hope that I will once again find myself but for now I severely lack in energy to do that. I would guess the answer would be to find time for yourself, to keep doing the things you are passionate about. For me, those choices have partly been removed and I barely have any help to actually have time for myself. But if you can, if you have assistance, try do those things which you were/are passionate about!
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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.
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HomelyandBald Sep 2022
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.
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Dear sir: I am very sorry that you feel so dejected in the care for your dear wife, Teresa. Let's lift you up today in spirit and thought. You are a stellar caregiver. While any one of us here on the forum either in active or past caregiving certanly know that caregiving is difficult, it is also the gift of love. You do have your own identity as you must care for yourself also.
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Dear HomelyandBald....
You are always who you are! You don't nor cannot lose your identity by being a caregiver!! That's really silly!
My dear old friend and neighbor took complete care of his wife, who suffered from Rheumatoid Arthritis and was bedridden, for 29 years!!! Think about that! 29 years, caring for her, lifting her to carry her to the bathroom, dressing her, bathing her.....29 years! And he was happy to do so!
When asked how could he devote so many years caring for her, he'd simply shrug and smile, saying, "She'd do the same for me, if it was me who was stricken."
He was our Hero!! What a great man! We loved him! He cared for her to the end....she never had to go to a nursing home.
And, after her passing, he went on to live many more years....succumbing to heart attack and accident on his 102 birthday...he passed the day after his 102 birthday....What a wonderful man!
So, you see, it's a good thing to care for a wife or husband.....it makes the caregiver quite the Hero!
May the Lord be with you! Shalom! 💜🕊💜
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This is a question we sll struggle with. I have been caring for my parents for about the past seven years. I am fortunate because my mother died in independent living and my father who is 96 is living in assisted living. One would think that I am off the hook and I wouldn’t have to do very much caregiving. Well, that is not true. Even if they are in a facility you still have to do some caregiving. It basically is on how much you want to do as of course you can hire everything out. Of course, it’s quite expensive and your patient may not want to spend their money on what you can do for them. I battle with boundaries. I think boundaries are very important and should be set up early in the process. If you do not find time for yourself and for your well-being, you will find down the road that you are tired and burned out. That is how I feel today. You will find that caregiving will entail taking your spouse to doctors appointments and gathering supplies for them in a home. You will also feel obligated to visit as it will seem like the only caring thing to do. Then, as they age, their mind changes and everything gets harder. Again, you don’t want to leave them because you are all they have. So, while my answer seems simple, sometimes it’s hard to set boundaries and care for yourself too. However, I would urge you to do so. if you belong to a church, you may be able to find some church members that would be willing to come over for a few hours while you take care of other chores or just take care of yourself. Generally, this is free. If you keep going down the path you are going, you’ll find that caregiving is all consuming and it has totally consumed you. Boundaries. Good luck. Caregiving isn’t for the faint of heart.
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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.
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HomelyandBald Sep 2022
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.
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Good Afternoon,

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!
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Try to find ways to get some "you time" when you can pursue your interests as an individual. Caregivers need breaks from this demanding "job." Reach out to a local social worker to discuss your wife's and your (as a caregiver's) options. Much will depend on your finances. Accept all the help you can get. Your wife may be eligible for some in-home care. Some areas have adult day-care, where they will pick up the client, provide them with activities and then bring them home. Also make a plan for a time when your wife may need more care and caregiving may be too much for you. This time may never come, but it's good to know what you need to do before it is an emergency. Discuss this with the social worker. All the best to you and your wife.
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I can empathize, like so many people here. Hubby and I took care of my mom for 5 years, when she had Alzheimer's. After 1 particularly rough day, I went into the bedroom and polished my nails, just to feel more like "me," and not just a fulltime caregiver, which is what I was. Exercising was inherent in my caregivng duties, because she'd often wander, as so many Alzheimer's patients do, and I'd wander right along with her. Sometimes she didn't know me, but she knew I was a nice person helping her, and that was fine. If you enjoy any hobbies, I'd suggest pursuing them when I could. Good luck.
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Unfortunately, caregiving is also unpaid work, with no holidays or vacation unless you hire expensive help, with a difficult future. What help will you get when it's your turn to get help for yourself?
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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.

Sending support your way!
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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.
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Sharrie98 Sep 2022
Yes, a new question. Great question!
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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.
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My sister's husband cared for her for 12 years at home and it affected the whole family. He had to work so had carers every day during the week. I helped when I could and was there at weekends and also covered for his regular holidays. I can't lie, it was an awful 12 years and seeing my sisters decline whilst the Alzheimers took over was just awful. He had frequent breaks and had support from Social Services. My advice is to get as much support as you can and take regular respite breaks.
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I am the sole caregiver for my Mom and have been for almost three years. You do not have to lose yourself with caregiving. I’m not saying it’s easy because it isn’t and yes everyone’s situation is different for sure. What some of you on here have done and do for your loved ones I could never! But my advice to you is to take it a day at a time. Savor and enjoy the moments you have together. And take much needed breaks! You need to have a life outside of caregiving even if you are caring for a spouse. Life is hard sometimes. Make the best of it. Just because you are your spouses caregiver doesn’t mean your life is over. In the beginning of this journey with caring for my Mom I really wasn’t enjoying it. I was angry at my sisters for doing nothing and want happy with the situation I was in. Since then I have grown so much! I now see my caregiving as an honor. I know some on here may not agree but I get to spend precious time with my Mom and no it isn’t always rainbows & sunshine but we make the best of it. Yes my life has changed but I have made it work for me by getting help. I have a network of people that I can reach out to and have breaks throughout the week. You need it. You cannot do this without help! I have two companies I use, I have a supportive husband, three wonderful grown children, my sons gf and supportive friends I can call for help! I learned this the hard way but now things flow better, not perfect but better. Best of luck to you!
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Take pride in doing the best job as caregiver as you are able to do. Recognize your ability to solve problems and deal with crises. In addition to patience, care giving requires attention, flexibility and creativity: immensely useful skills in life. If you can arrange occasional respite care or part-time jelp, by all means do so to give yourself a physical and emotional break. Maybe you can find a caregiver support group where you could share your concerns and frustrations if you have someone cover for you at least once or twice a week. It may be worth the expense of hiring Home Health help to give yourself some time to maintain your own health and sanity.

You may not be out and about socializing or enjoying your own pastimes, but you have not lost yourself. How you approach your role as caregiver is part of your identity.
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That’s part of the “ For better or worse” vow. You are still her husband, even if you have to remind people and write yourself notes.
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I so agree that when you "become a caregiver" somehow a shroud covers you. Getting out with a friend is surprisingly rejuvenating. A friend who knows you from before you began caregiving is great because there is so much more to talk about than the current caregiving situation. If you can, hire a helper to come for a block of 4 hours or more. Then leave the house to meet your friend for lunch. Admittedly the conversation sometimes turns to caregiving so I plan to give that subject maximum 15 minutes because I have found that even good friends get tired of listening to that story. Afterwards plan another get together so you have something to look forward to...that is also surprisingly helpful. Though admittedly this may seem like a far cry from what we used to enjoy, or what we would like to do, it is what it is for now. It won't be forever. I hope you find something that helps.
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No problem, people are jealouse but , God knows your heart and just do what you are doing. Only you know that being a caregiver for the one you love makes you a better person than others. Blessings to you....
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I don’t trust those places. I would rather have a safe person come so the family member will feel more comfortable at home. This way everyone is happy
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Fawnby Sep 2022
I’ve done that with three loved ones. Everyone isn’t always happy. We had wonderful caregivers, but there are many problems to manage and the buck stopped with me. There are wonderful care facilities if you can find them, and after many years of my life being disrupted, I realize now that my LOs should have at some point gone to live in them.
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just get a good caregiver. The days the caregiver comes those are the days u have for yourself.
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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!!
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HomelyandBald Sep 2022
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.
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When I volunteered at my local Hospice in-patient facility, I discovered that they offer respite care. A spouse who needed a break, children caring for a parent who wanted to take a vacation... they could take them to be cared for at the Hospice Facility during the time they could not be caregivers for their loved one. From what I witnessed, that worked very well for everyone! Perhaps you have this available near you?
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As with any job you need to take time off for your self and do some things you want to do.
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Above all, you do be NOT take on this burden alone: because you can’t do it alone. Make sure you have some help for her care, and make sure she knows this will happen: it will not be you every time! I cannot emphasize this enough, after my own experience with being the ONLY one doing anything.
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HomelyandBald, when it comes to husbands and wives, I never considered that one spouse is the "caregiver". I consider that helping each other is part of marriage. It is unfortunate that others don't view it that way.

When one thinks about it, when a couple has children there is a ton of extra work involved, they are never viewed as being a caregiver.
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elmer1 Sep 2022
It's clear that you have never done this.
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Once you begin caregiving, it's really difficult to retain how you believe others see you. Plus your perceptions of yourself changes as you become more involved in the caregiving process. The initial stages of caregiving, I found, were the most difficult. Desperately wanting to hold onto who and what you have been during your life, and imagining what your life will be hence forward. Once you have been at it for a while, you come realize that you've changed as a person and maybe your identity has as well. You are a caregiver, and that is your new identity. Go with it.
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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.
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Candyapple Sep 2022
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.
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