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Although I don't know exactly how you feel because I am not in your body, rest assured most of us on this website feel absolutely overwhelmed caring for our loved one(s) dementia diagnosis, and it is okay to feel overwhelmed. Just don't let it consume you, and when the family and church friends want to make this their "cause", take a break from them and tell them you need to spend time alone with your husband. Nothing compounds a problem more than well-meaning people who are only distantly related to the challenge. You have to live day in and day out with your husband and everything you have to take care of, so stop having so many voices talking in your ears. Silence is most comforting. Trust me, this too shall pass and you will get your life back.
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While your husband's needs have reached the point where they far outpace yours, you MUST make every possible effort to care for YOURSELF, both physically and emotionally. Get out with friends, lean on family, commiserate with others in the same situation, treat yourself to something nice, because YOU MATTER, and it's virtually impossible to face the challenges of caregiver unless your needs are being met. There's an old saying, "If Mama ain't happy, ain't nobody happy," and that applies to just about every situation you can imagine. Thinking positively reaps big rewards too, as patients often mirror the moods of their caregivers -- in other words, we get what we give. Letting ourselves go physically and emotionally benefits no one -- so TAKE CARE OF YOURSELF and the burden will ease.
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I certainly understand what you are going through. My husband had emphysema and then had a stroke. He has a concentrator in the home for the emphysema and has only minimal aphasia (difficulty with speaking and choosing the right words for things) from the stroke. However there are so many things he is not able to do for himself and some may seem so minor and yet, add them all together and they take up so much of my time. I have to accompany him to appointments and make most phone calls on his behalf. I take care of all our finances and handyman tasks around the home. I am sure you get the idea. :-) To add to that my 91 year old mother is severely disabled but still lives with my 95 year old father so they need my attention as well. I constantly have the feeling that I am forgetting to do something important and in spite of the fact that I know I must take some time for myself to maintain my mental and physical health,I feel guilty when I do. However, as you wrote, I love my husband very much and know even when I am feeling my most stressed that I would do anything to keep him alive and living with me. We still have fun together but in different ways than we used to and our shared memories are treasured. I have no advice for you but just wish to let you know you are not alone. I see others have answered as well. Take courage, Dear Niloga, you have inner strengths that will help you keep going.
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I and most all of us here understand your feelings, Niloga. That feeling of not having a life of your own and not really seeing the daylight at the end of the tunnel. Even when you do have some support to be able to leave the situation for a few hours or even a weekend away, you can still feel that your life is 'on hold' and you long to simply be yourself again. I think we all deal with our situations a little differently. We all feel the stress and even depression and anxiety at times, but some of us can handle it better than others. I suppose we all have to find what works for each of us. But do try to think outside the box and find what might relieve some of the pressure. And NO one should try to tell you you should be grateful for the support you do have and realize that it could be worse.
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Don't be afraid to ask for help. Sometimes family is willing to pitch in if they know you need a break from time to time; it helps to be specific. It's good that you have family and they are supportive. You can contact your local Area Agency on Aging or Bureau of Senior Services and ask about the family caregiver program. There is also senior care programs. Take advantage of the programs that are available. It is difficult and it certainly can be overwhelming, but you need to recognize that you too, need time for you. It's hard to find the time but it is so important even if it's just reading a book on the front porch or lunch with a friend. Find ways to modify activities your husband used to participate in, try to keep life as 'normal' as possible even with medical appointments and an extensive medication regime. Most of all, try to enjoy the things you can still do either as individuals or as a couple. You are not alone, there are many, many caregivers out there that understand. We are caregivers because it's what we do, what we believe in when we are part of a family. That doesn't mean life has to be all 'work' and no 'play'. You can also ask about caregiver support groups. Just knowing you are not alone in the caregiving role helps, and when talking with others you can come up with ideas that haven't thought about before. It helps to share.
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Hi, the advise given so far is really helpful and I echo the same sentiment as I have been caring for my mum. Went to search what is COPD and found this information by Philip which has just been released 3 days ago. Check this out and God Bless. Pray unceasingly for wisdom from above and trust that God wants to carry your burden so commit your burden to the Lord in prayers.

Philips gives COPD patients a lifeline with new gadget
There are many wearable health-trackers on the market, but few manage to bridge the divide between personal and professional use. Philips today announced the release of a new wearable diagnostic device for chronically ill patients that promises to do just that.

By using a digital biosensor, Philips is now able to record biometric data of people suffering from chronic obstructive pulmonary disease (COPD), then push that data to the new cloud-based HealthSuite Digital Platform using the patient's personal mobile device. While the biosensor itself isn't new—they're using an existing sensor called the HealthPatch—the cloud-based service allows both patients and doctors an unprecedented level access to realtime, round-the-clock health data.

According to Philips, physical activity and inactivity, respiratory function, heart rhythm, and heart rate variability are all monitored. The data is then retrievable via two apps: Philips eCareCompanion and eCareCoordinator, making it possible for doctors to monitor patients remotely.

"Instead of people just going to the hospital when things have deteriorated—they're so short of breath or it becomes life-threatening—[the information] is coming in way ahead," says Jeroen Tas, CEO of the Philips Healthcare Informatics Solutions and Services business group.
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I too have been taking care of my husband for 4 years now and he just turned 62. He has a degenerative muscular disease along with a feeding tube. I first felt that life was passing me by and carried heavy thoughts of so hating my life and deep depression. I do not have the luxury of friends or family support, so I had to lift myself up and look for ways of taking care of me. I first placed my faith in God first and believe me when I did doors started to open up for me. God placed strangers in my path that helped me through so many things and continue to do so. I had first fought for three long years to acquire his VA benefits of which he would never done on his own. We lost our home due to his illness because he could not work, I could not work due to his care. I found a program called Respite through the VA and found that I can get 30 days of paid care in a nursing or rehabilitation center for him to stay at so that I can get away. I had the choice to break it up into days, weekends or weeks. It was the first time in 4 years that I was able to go somewhere and not worry about his care. It hurt me some to leave him, but I was so glad I was given the opportunity to get away. We have a son who lives nearby but does not have a strong bond with his Dad, how ever he is there for my strength and support. Since the onset of his illness I have come to terms with his illness and care with the help of my faith and I am making efforts to make friends, even if it's just talking to some one standing in line some where. I have recently moved us into a beautiful RV resort that has a swimming pool and fitness room so that when I am between his feedings I can get out and do more. I bought some relaxing cd's to listen to along with my gospel songs. I make use of the library and read inspirational books. I know that aloneness you are feeling as I still feel alone while sitting in the same room as my husband. We used to do every thing together, even worked the same hours and the same job we were together always and now I miss all that as I have been thrust into doing everything. I too do not want to sound preachy but God has a plan for us and I placed my life in his hands he fills my needs first with financial needs and then the doors that he opened up for me to seek the means for not only my needs but the means to take care of a husband of 39 years. I too have been bracing myself for the time coming when I will have to place him in a nursing facility for good. I have never had to do for myself let alone take care of some one 24/7. Please let go of guilt, place strength in your faith and do your best to take care of you. Sorry I made this so long, believe me you are not alone I felt this way for such along time, but no more. God bless you and stay strong for you!
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Let's be real god can not solve all your problems my wife has Alzheimer's and everyone tells me to look after myself(doctors words -recharge your batteries) as long as I am doing everything possible for her what is the harm in finding a companion to go out with and yes have sex. As it's not much fun going somewhere alone or with other couples one feels like a fifth wheel .i am copying as well as I can it's such a sad sickness with no cure but getting worse
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Yes, others understand and care. Yes, it's normal to be lonely and overwhelmed at times, and these are not bad things. It really is ok to surrender to your feelings once in a while, see what lessons you can learn from this part of your journey with him and make peace with how his illness doesn't meet with your expectations.
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Niloga, I fully understand where you are coming from, believe me! I have been caring for my husband with dementia for a number of years now. (Who knows just when it begins). I read comments from others who are taking care of parents (I did that, too, with my mother, but not 24 hrs. a day). Somehow it is just a larger burden with a spouse, for you are at it 24 hrs./7da. week with no rest. In addition to caring for my husband, I have had to pick up all the chores that he once did. Just this morning I had to add windshield washer fluid in the car (which isn't a big job) which is something I never had to do before. This is just a very small example. I just sent a letter of (hopefully) encouragement to my dear friend whose husband is bedfast and an invalid for the past nearly 2 yrs. I can have compassion for her since I am strapped to my house as well, you might say. Both you and I must find a way to put our husband's under the temporary care of another individual while we get some much needed rest. I have not been able to find a way to do this and none of the suggestions I have seen help me. They only tell me what I already know - you MUST do it! I, too, ask God for strength, ideas and peace daily, but we still need some REST.

People talk about classes - well, I have no time or opportunity to take classes. My husband say NOW, that all I do it run. The reality of it is: I get our groceries - one bag at a time - and I try to keep my fitness in check. The remainder of running is to the doctor (for him) and very occasionally a trip to one of our two son's. That's becoming nearly impossible as he never wants to go - doesn't want to go anywhere.

Yes, I do understand your situation and your frustration. I'm afraid to ask God for patience, for in the past it has made things worse. (Just kidding). I do ask that I could be a kinder person, but, believe me, there are those times when I feel less than a Christian.

May God bless you and my hugs to you as well!

Campy
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I cared for my husband for over 35 years following an auto accident that left him with permanent brain damage. He passed away in 2012, and I had time for reflection in the year following his death. While I was in the caregiving role, I often felt alone and believed that life was passing me by. Looking back I realized that life was NOT passing me by -- this was MY LIFE. I believe that God was with me the whole time and knew exactly what I was going through. I also believe that I am blessed for doing the best I could. I started a Care for the Caregiver class at my church and like to compare our caregiving journey to a maze vs. a labyrinth. Our perception of which one we're in can make a huge difference in how we feel. One can get "lost" in the maze, experiencing fear, frustration, loneliness, etc. If you imagine your life's journey as one in a labyrinth, with God guiding you, a huge weight will be lifted from your shoulders. You still won't be able to see what's around the next bend, but just knowing that God is with you will alleviate a lot of the fear, anxiety, and loneliness. I also believe that caregivers receive a special blessing for their loving and nurturing spirit. You'll develop a closer relationship with God as you walk the labyrinth, and this itself is a blessing! I hope this didn't sound "preachy" but I felt compelled to share this with you as this perspective has helped many others who have participated in my classes. God bless you on your journey!
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I'm not in your shoes, so i can only imagine how tough it can be for you. I care for my 96 yr old mother, who over a month ago fell out of bed and broke her neck in two places. I also have no help at all, except for Hospice. The Nurse Aid comes 3 times a wk to bathe and pamper my Mother. The nurse comes once a wk. She is bed ridden and right at the moment is wearing a diaper. I finally came around to realize that i need to use some of her money (ok'd thru the bank guardian of course)...to hire an agency called 'Visiting Angels'..They charge $20 an hr, which is a lot of money...but people keep telling me that if we don't take care of ourselves, then who will be there to take care of our loved ones when we can't. Someone has to be with Mom 24/7, sooooo...I am Now at the point where my favorite person from VA comes once a wk and stays from 9am to 6pm. Yesterday ws my first time with that. I was away from home and with a friend, went out for lunch and learned some history about the owner of the establishment and on for a long drive to buy a paper weight (Joe Rice). By the time i came home, i just felt so good about myself and life...even though it rained all day and was GRAY. I also have a friend that i can call if i'm ready for a 'melt down'. It just takes 'saying it' and i'm ok..(Or i go out to the garage and scream...lol. I know that one day everything is going to come back and hit me in the face, as i gave up my job and have no income except for my SS. But all the things that i willl face, i put them all on a shelf and closed the door. I will open that door when the time comes. I take it all one day at a time. No choice, so i might as well make the best of it.
Good luck. You Really need to get away.
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After reading your question, I am wondering who needs the help! Please understand, I am very aware of caregiver's mental, physical and social exhaustion. However, you have family and lots of friends...many caregivers have no one! If you have "lots of support" as stated, love your husband and still feel overwhelmed, I'm not seeing the entire picture here. There are countless of caregivers that have no family, no support and no one to turn to...count your blessings. During my lifetime I have seen caregivers destroying their lives because the healthcare field is so focused on the dementia patient, the person caring for that patient is ignored and overlooked. There comes a time when the caregiver can no longer recognize their own needs from the constant day-in-day-out absorption caring for another. Statistics overwhelmingly show the caregiver usually dies before the patient. Why? Because there is a lot of blah, blah, blah, out there, but really...for most part depression, loneliness, reaching out is seldom addressed until the circumstances become dire. Please be exceedingly grateful to have all those family and church members to help you. However, being totally honest, if you are overwhelmed with all the support you fortunately have, please stop and think for one minute and discern what your life would be like if you were alone caring for your spouse, as many caregivers are. In one word. I would be "grateful." Exceedingly grateful. God bless you.
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All caregivers go through this you are not alone. I was told by an expert that statistics point to 66% of all caregivers die before their patient/loved one. We don't take care of yourselves.

Don't hesitate to get help. Treat yourself to a much needed vacation, a night out or weekend away. Seek help and take it when it's offered. Giving up control is hard because we think we are the only one who can or know how to care for our loved one. This is simply not true. Sometimes the best thing for the loved one is to give up control. God Bless and good luck!
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I so get where your at. You do not walk alone. I also care for my husband with Solvent Dementia & my children are in spirit. I do the dance alone, with no other's help. Helps because I am a R.N. I do it with the help of GOD just as how I raised my 3 children with the help of GOD. I am where I am to be & it's just different. This is a good site for other's to talk with so you ARE NOT ALONE.
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Loneliness is a huge issues for caregivers. I'm caring for someone with serious lung issues now and I understand the drain on the caregiver. It's horrible to watch the suffering your loved on must endure but as you all say, the world passes caregivers by.

Whether we are running between several people or concentrating on one, we never get a break. It's easy to say take time for yourself, but very hard to do. There is no easy answer for any of us but there is support right here on agingcare.
Carol
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I know how you feel I 've been taking care of my Dad can't walk and dementia I have 2 sisters and 2 brothers that do not care and just expect me to do it all. I realized I have to take time away try to find an adult daycare in your town there are some that are wonderful even if just a few hours a day or week or have homecare come to you for just a few hours a week if you don't get a break your going to need someone to take care of you
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I am the only caregiver for my young daughter who was brain injured as a result of a car crash a few years ago. before that she was teaching school. now she lives in a nursing home. no one helps me; with the exception of one retired school teacher who visits her weekly.
I also take care of my 87 year old mother. I once again have no help with her.
both me and my mother were active volunteers in our church. however, we havn't heard from the church in years.
I feel so alone also. everyone has gotten on with their lives and we as caregivers feel stuck in some sort of a ' time warp'.
the good news is that our family who we are taking care of are happy as a result of our caregiving.
thank you.
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My heart goes out to you! I cared for my paralyzed, ventilator dependent husband for four years at the end of his life. We had been married for 35 years. I can only validate that it is exhausting and you are in a state of grief. You have lost your partner of a lifetime and your life has changed in ways you can never imagine. Be as good to yourself as you can be. I spent so much time believing that I didn't have the right to be tired, angry and lonely. Your feelings are valid. You have a need to be cared for just as much as your spouse does. I'm glad to know you have family and church family, which leads me to believe you have faith to lean on as well. I wish there was an easy answer, but the only answer I had for myself was "the only way through is through." See if there is a local support group. If not, get with a grief counselor, or some type of counselor who can help you and validate you. I let myself burn out by not taking care of myself, by being so sad and burdened by my husband's condition and my inability to meet all his needs that at the very end I just couldn't care any more. I am very sad about that, but am working my way through understanding that my needs were just as valid as his. I am struggling for words here. It is as if you have been widowed without being widowed. I had to learn to go places by myself, form friendships that didn't involve my husband as he couldn't leave the home for the last 2 years of his life. I couldn't meet all his needs, and the harder I tried the guiltier I felt. So if I could tell you one thing it is this: let go of the guilt, find ways to nurture yourself....do the things that give you the most joy...and let down the burden of caregiving as much as you can. In the times when you are away from him and his needs, allow yourself to relax. My best escape was to go to a local pool several times a week and do water exercises, then sit in the whirlpool. So be gentle with yourself, acknowledge your sadness at the loss of the partnership you had, do what you can and leave the rest in God's hands as best you can. You will get through this. Hugs and prayers coming your way from one who has walked through this herself.
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yes I do, my Dad has pulmonary hypertension and is on oxygen, he is 89 and very much with it, I would never put him in a home but it is ALOT of work I am 57 and feel much older, I have no time for myself, ever. 2 brothers who never even ask to help or give me a day off, my sister lives in another state so she is here about once a month im having much anxiety and love bed time as its my only time for me
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It's all so depressing. I am normally an upbeat person with a positive attitude and I am trying my best to stay that way. Some days are harder than others. The worst was when my husband asked for a little loving. He cannot talk, due to loss of vocabulary. So I was happy that he asked, but sad to respond "NO". Who wants to make love to a person who has poop in his Depends and under his nails. I just can't do that. And no matter how much he gets cleaned up I can't get myself in the mood for that. Besides which he hasn't been able to for at least 12 years. And when he tries he wants me to tell him how to do it. He can't! Anyone else have this problem?
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I really do understand. I cared for my wife of 50 years who had Lewy Body Dementia and Parkinsonism for 10 years. The really need to help and support her was since the Lewy Body Dementia was diagnosed in 2008. It has been a very slow downhill until the last 2 weeks of her life. I lost her on 9/27 to respitory arrest caused by Lewy Body dementia. Just do what you can and understand the disease is what causes this, not your loved one.
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I have been diagnose with COPD, retired 2 years and a bunch of other issues on inhalers. 2 children live in another stat, I have no family here but a few friends. It's scary to think if it gets bad so when I do a living Will I plan to go to a nursing home.
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Oh, yes. You have a packed house here of people who understand what you're feeling and what you're going through. Not exactly how you planned to spend your retirement, is it? Or your "golden years"?

I hope you have some friends to lean on . . . to unload on . . . to go to dinner with, etc. You are entitled to as much life as you can squeeze in. If you allow it, his illness will consume YOU.

Keep reaching out. Plan shopping trips. Go to a movie with friends. Dinner. Have them over to your house if you have the energy. Keep your husband as involved as you possibly can; but when/if he can't? You must take care of you.
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How bad is the COPD at this point? Normally at the begining you are looking at some inhalers and steroids. Later on you will be looking at home O2 and maybe a portable concentator for when you go out. I know it's scarey but it is better than alot of illnesses someone can have. You can still travel, shop. etc. And if he is smoking.. try to stop that. COPD is from smoking or a job with exposure to chemicals But some people do get it who never had those factors.. If he wont stop, go with the medicine routine and do the best you can. You can;t cure it but you can manage it for a long time.
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We are here for you. You will be surprised to find out how many are in the same boat you are in. Married 42 years. You're probably in your 60's Retirement isn't what you expected. I'm sure you expected more freedom and less hassle. You feel eaten up by COPD even though it's your hubby, not you. But as his spouse, you probably wish you could take this on yourself. We become very maternal when our husband becomes ill. Try to imagine if you didn't have the support from sons, family and church family. I say this so maybe you can count your blessings. When I get to feeling overwhelmed, I try to think of others less fortunate. Works every time. You need some time to yourself. Does husband need someone with him 24/7? Call some girlfriends for a lunch date; go to the library; attend a lecture; get a pedicure; go to the park for a walk; enjoy the fall leaves. Look for a support group. Someone to talk to often helps. Get going. You can do this.
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Oh, but we do understand, and we are here to support you too. Caregivers need medical care too, and time off to rest. A weekend away would do you wonders. Get one.
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