How do you cope with the loneliness when caring for a disabled husband?

Dear Shipjean.......You were pretty much writing my story a year ago. I was alone taking care of my husband. He had Dementia as your husband does and was also legally blind with no sight in one eye and very little in the other. I also felt very alone, but not as alone as I do today, since my sweetie passed September 17 of last year. We had no children and I have no family living near me either. I so know what you are feeling. I was also not motivated to do anything once I was finished working for the day. After all.....you are really working two jobs, just as I was. Just how much energy are we supposed to have at 67 years old anyway?! Do you have friends that check on you from time to time? I did have one friend that checked on me at least once a week. Many people told me to quit working, but I found great comfort in still working once my husband was gone. If you would like a friend to share with, please let me know. We have lots in common to be sure.

Please consider offering / starting a support group yourself.
There are likely many people in similar situations as you are in that would appreciate the support as much as you would. Posting a notice at local churches, senior centers, with county services for elders offices, community centers, and day-care centers know of your need will likely meet with a lot of responses.

It can be overwhelming to even host or organize something like this.
Put in a post that you would like to share the responsibility and ask for help in getting this started. If you wish, I would be glad to print up a small post/notice for you. We can talk about the details/specifics. Contact me. Gena.

Dear Shipjean
I fully understand what you are going through. I took care of my total-care husband for over 20 years before he died at 46 yrs. He had MS and it started the day after our wedding. We were in the hospital before the honeymoon and by the 3rd year he was bed and wheelchair bound and the last 15 years of his life he could not speak, eat or move any of this limbs, including his head! I was a caregiver wife.
I can tell you that your situation is not hopeless! You are well aware of what you are feeling and self aware enough to know what you need. You say your husband isn't hard to care for and it sounds like he is still somewhat independent.
I got remarried and my now husband's mother had dementia for the first 3 years of our marriage before she died. I understand dementia a bit.
I can tell you from my experience that even if you sat all day with your husband and had very little to do for him and he was able to make it as easy as possible on you, you still would be worn out at the end of the evening. Caregiving is not just a physical job. It taxes you emotionally and mentally, and probably more than the physical aspects. It takes a lot of self awareness to be able to advocate for not just your loved one, but yourself as well.
My first husband and I also moved away from family and I was totally alone ( I had even broke my leg a month before we moved and could not delay moving)! I was totally in a new community, with a long leg cast on and a husband who needed total care 24/7! I can tell you, life can be full of hardships. We make them worst when we do not care for ourselves. I had to call ahead and make connections in the new community before moving. I had to make a hundred calls and talk to a hundred people to establish our presence in the community with the right agencies that I knew could help us.
I believe you need to do whatever you can to advocate for yourself. See the doctor and get bloodwork to make sure your brain function is ok. Sometimes it's an organic change with our brain chemistry. If it isn't, then you know that it's the effects of caregiving and being unconnected in a meaningful way with others who understand your situation. Look for groups in your area through organizations that relate to dementia and caring for someone like your husband. Reach out please! Not just at work, but beyond. Force yourself, if needed at first, to do a hobby and make connections with folks doing the same. Listen to your favorite music, dance in front of your husband, watch comedies with him and make sure you laugh a little everyday! Do you have a faith? Invest if you do, go to church and get with others ladies. Reach out please! Journal if you like to write. Sing if you like to sing. Walk or find a group that walks and join. They are everywhere now, "Mall walkers" they call them. Reach out and educate yourself of what is available for someone like you in your situation.
I am glad you reached out here. I am very glad that this site has folks on it that can reach back. I wish I was close to you, I would love to take you to lunch! Get respite anyway you can and work on improving your personal situation for your own health sake and your husband's. You won't regret a minute! The best thing I ever did for myself was to invest in other people, no matter how it's done, it is rewarding to connect with others that can reach back in meaningful ways. I hope this helps you. I hope your situation improves. Please let us know!

Been there, have the t-shirt and the mug and a medal. I think Marti1140 hits the nail squarely on the head. You are mourning. I was mourning. Therapist Pauling Boss calls this ambiguous loss. Your loved one is still with you, but in significant ways he is not present. And as Marti points out, your mourning is not acknowledged in the community or perhaps even within your family. And that is very isolating.

You have received some very good suggestions for activities to help with the loneliness. I particularly like the idea of starting a caregiver support group.

But in addition to activities and respite (necessary!) I found it incredibly helpful to understand the ambiguous loss I was experiencing. The book that helped me was "Loving Someone Who Has Dementia," by Pauline Boss. She has another book aimed at the professional community, but this one is highly readable by caregivers.

I'm in a similar situation shipjean. I left my job to care for my husband who, at 67, has front-temporal dementia. We're near my parents, and I can't imagine not having them for emotional support. It still gets very lonely. I've made an effort to reconnect with some of my old friends. Facebook has been a savior for me. It lets people check in and allows me to feel connected even when I can't see or talk to them. I find myself irrationally getting very frustrated with my husband these days, and then I feel guilty. It definitely helps to let off steam with people who are willing to listen, but probably the biggest benefit is keeping up with them and their lives and the world my husband and I are seeing less and less of these days. I feel like I have less of my own time than when I was working, but even if it's after he goes to bed, I DO make time to spend on just me.  I will say that about the suggestions to join a group--if your situation is like mine, with no one to stay with your husband--that's much easier said than done.  That's one reason I like this online group.  I'm typing this while he sits beside me laughing at the TV.  At one time this wouldn't have been considered quality time, but now it's about the closest we get.

Dear shipjean, Hugs and Love to you. I really have no answer for you but I just wanted you to know that I share your difficulty. My husband's disabilities are a little different but I definitely understand what you are going through. I'll bet you feel frustrated with him at times and then feel guilty because you know it's not his fault when he forgets where things are. I have many days when I wake up feeling motivated and then some minor interaction with sap my energy and drive and I feel, 'Ah what's the use?'. Then I feel angry with myself because I am not getting on with the things which need doing.
Is there any chance speaking to the mayor or a town councillor would help? They might know of someone in the community who is ideally qualified to provide some respite care for you. There might be a church group with someone to help or even a teenager who might be thinking of a career in care giving. The rest of the community might not realize how isolated you feel. You might be surprised at how willing they are if they only knew how to approach you. I'm only guessing of course.

I will be thinking of you and hoping a solution comes up for you.

I am so glad I found this group online. It's been a huge help knowing there are so many folks out there experiencing similar things with their loved ones and knowing it's okay to experience some negative thoughts about your family. So, I went to visit my mom in Memory Care today. She's lost a lot of weight, apparently saw her reflection in the mirror and said to me "I look like Abraham Lincoln's mother". We had a nice laugh.

shipjean, in response to one detail you posted, about television watching. At first my husband couldn't focus for more than a few minutes at a time. I was thrilled when he improved enough to be able to watch television! What worked best were videos of shows he used to like. No commercials to interrupt the flow. Familiar characters. Plots he could follow because they already existed somewhere in his memory bank. Coy loved Northern Exposure, Hogan's Heroes, and even Numbers. I watched Sherlock Holmes episodes with him that we had watched together years before. He also loved travel and nature videos.

Your husband may be beyond engaging in watching videos. But it is possible he would enjoy them even if he can't follow televised shows.

shipjean: I believe that your loneliness may have manifested itself into extreme exhaustion. I feel for you...I really do! When I was just about at the breaking point taking care of my mother out of state, I recognized it and asked for help. Even just 2 persons taking her to appointments was enough for me to get some strength back. Ask for help. Churches sometimes have a "meal train" that at least allows you to catch a break. You may even be able to find a Vascular Dementia support group near you. You cannot continue to be a "one woman show." It isn't good for your health. Thank you for coming on here for support! You're in the right place!

shipjean and all the other people who had input on her problem:
First of all, I understand. That does not mean I always handle these things well. I am human also. First I hired a personal assistant, house cleaner, driver, etc.etc. She is knowledgeable about medications (my downfall), patient with the dementia, and my live in friend likes her and trusts her. My friend is in his early 80's and I will be there in a few years - she is in her early 20's and studying to be a home health care person.
She has been a lifesaver for me. She has the ability to grasp the situation and the heart to deal with it. Not to mention the energy of youth!! So, I guess my response is to find help. It is not easy!! Most home health care people require you to keep their schedule - spend a few minutes with the patient and the rest of the hour on their computers (saying god knows what)! I have found finding a person that is knowledgable - willing- and able to help will see my friend and I thru this. My children help all they can but they have jobs - family - and responsibilities of their own. They do consider me a responsibility and therefore my friend. They are good caring people - I know I raised them to be that way by example. So, please look for the help you need - it is out there! Perhaps not in a business that specializes in that - but finding the right person that you can hire to help you thru this phase of your life. I wish you luck, remind you to remember to take care of yourself, but do find help from a person you can work with.

My heart is with you
rosepetal

We are in Florida and take care of my Mom, we applied for a medicad wavier, it took 3 years but we finally got it, it gave us 16 hours of care ( 4 hours 4 days a week) of someone coming in to take care if Mom so we could get out. The purpose if the program is to keep people out of nursing homes. You could check and see if your state has a similar program. Unfortunately Mom fell and broke her other hip, and will never walk again and needs skilled nursing care.

I know how difficult it is being a care giver and not having anyone else in the house to support you,help or talk to. You seem to have a good attitude and good skills I wish you the best of luck.

Just wanted to add my mother is not on medicaid, the wavier it to keep people in their homes so they don't end up in a NH and need medicaid. It gives caregivers a break, it subsidizes home care to make it afforable. I know Florida has it,not sure about any other states but was a real life saver for us.

My mother, too, had a medicaid waiver and as her needs became greater, I would ask, and generally get, more help. The amounts of the help available, at least here in CT, depend on the elder's needs. There are, I think, four tiers for at home care.

I may need to consider moving. Texas has the bare minimum. For everything and everybody, except the cronies at the top.

ShipJean just found you post and want to tell you what a wonderful person you are. I have not read through all the other replies ( there were so many i thought this must be an old post)

I realize you must be devoted to your husband and want to continue to care for him but in view of what happened on the flight have you considered making him a DNR? Hard decision I know but one worth thinking about. From your experience in medicine especially with healthy young men and women you goal was to save them at all costs. Blessings to you both

Shipjean let him play freecell as much as he wants. It's fine. He has nothing to prove and it seems he is content. He isn't going to get better.

You say that there are no support groups in your town. Maybe there are some not too far away but you don't know about them because they are hard to find? Maybe a social worker can help. In any case, call your local Area Agency on Aging for help (all states have them though they might be under a different name). Also call the Alzheimer's Association's 1-800.272.3900 24/7 help line. It isn't just for Alzheimer's.

One that no you might look into is see if any church in your area has trained Stephen Ministers. These are lay people with intensive 16 week training on how to be confidential one on one caregivers to people going through a crisis or issue such as yours. They are listeners not therapists. I know what a great program it is because I went through the training and went on to train as a leader. This free and they visit once a week or whatever is required if it's less. It really is wonderful. You didn't say if you attend church but that is another way to have a connection to others and hopefully get spiritual needs met. These are thoughts since you mentioned God. You can go online and find the main Stephen Ministers website and then search for a church near you.

Also if you have a local Alzheimer's Association near you, they can direct you to support groups

Hi shipjean, I understand what you're going through. After 42 yrs. together, the loneliness is very difficult, along with the absence of a close physical relationship, and the change from being cherished as a wife to being a full-time caregiver. My husband is 66 and was diagnosed with Alzheimer's a few years ago, in addition to cardiac problems. I find the decisions to be so hard. We used to be a team in everything, and like you, had a business together. My husband hasn't been able to work in some years and we had to close our business. We don't live close to our children, but his sister is nearby, as well as her husband's family. They are a tremendous help. I've looked for things we can do together, so we deliver Meals on Wheels together. He just carries in the food basket, but he enjoys making small talk with our clients, and it gets him out of the house. That might be something you could do. We also walk dogs for a non-profit rescue, and he loves the dogs, although he can't remember how to clip on the leash. The best support that I have is from other women my age who are in our local caregiver support group. We started a Facebook page where we meet privately in between meetings, and occasionally can manage lunch or an ice cream out. Lastly, I recently hired a young male CNA who is coming twice a week for 5 hours to "hang out" with him. I take that time only for myself, so that I can visit friends, go to a movie, walk on the beach, etc. I was surprised that my husband really looks forward to the aide coming. He takes him to the movies and other things, but they seem to just enjoy hanging out. Now my husband will be used to someone coming in when he needs more help. It's expensive, but it helps keep me out of the doldrums. Please consider medication, as well. Many people in our position need it to survive. Hang in there.

Hello Jean....my name is Diane from South Florida...I am reading your story and I am reading about myself....to the letter...my husband, 84 (I am 72) also has Dimentia and he makes weird moaning sounds during the day....he does not speak most of the day; no conversation...I told my sister it is like living with a stuffed animal sitting in a chair...it is so lonely....no discussions any longer; no decisions to make together, no thoughts of how you feel; he does not say good morning, good night, are you ok? and no more I love you....so sad...my sister said what do I need this for and I should have him placed in a Veteran's foster home...well that cannot happen because they will take his pension and social security and then what happens to me...same story, my sister is not the type to say hey not to worry, anything happens, we have plenty of room...first of all I could not live with her; I do not feel welcome...and my son has no room for me either...so the future does not look so great...you need to find a social worker in your town to discuss options...is your hubby a Veteran? .maybe we can be of help to each other exchanging ideas....I hope you will contact me. Stay well and no that you are not alone...we are in the same boat. Take care, Diane

Senior Centers have Respite help. You can leave your husband there with someone, They can help him with lunch, You could go to a movie or lunch with a friend,

Dear Shipjean,I had to write you because I am in similar situation as you are....
Eight years ago I left my country to get married . My husband was 74 at the time,16 years my senior. After five happiest years of my life,his health collapsed... He has had several heart surgeries,depression,colon cancer ,TIA,vascular dimentia,epilepsy....I thought to myself-ok,let's get over this bump and then ..but the bumps never stopped...I am 67 years old,in good health,thank God,but simply exhausted.My sons live in my old country,his son lives close by,but they have had a strained relationship,so,no help from there.No other relatives close by.I have not made friends since I came here....I feel stuck.I feel lonely.I feel like I am going to loose my mind if I do not do something for myself,I started getting really depressed,apathic and it scared me,it was so not like me,sooo,I am starting to make some decisions-I hired a person to help once a week so I can freely go and do something.Most of the time I just want to have coffee by the sea and think of nothing.I just do not want to be needed and responsible for a few minutes.I started meditation and yoga in the morning-with the help of you tube....before my husband wakes up...Sometimes instead of that I go swimming in the Adriatic Sea at six am,it is so beautiful and peaceful..I am gone maybe an hour or two while my husband still sleeps....I joined an american book club that meets once a month.....I talk to my girlfriends from my old country,but none are in a situation like mine,and as the old saying goes,one can never truly understand another person until they walk in that person's shoes...So,I feel like I am treading in uncharted waters and not knowing how to handle life as I have it.Discovering this AgingCare and Caregiver's support group helped me a lot .... reading stories,suggestions,encouragement ..... I guess like for everything else,there is not one big miraculous solution for our situations,the trick is -to keep looking and finding little things that help,the right people that will try to listen and hear what you have to say.....Since I started writing this,I had to take my husband back to the hospital,here we go again.....If it was not so windy I would go swimming...The way I feel,I could actually swim from here all the way across the ocean....Good luck to you,keep us posted on your situation,hugs from Italy

Oh how my heart goes out to you. Two suggestions. Exercise. It changes brain chemistry and helps with mood and energy. Give daily walking a try and give it two weeks to start to see a change in energy/mood. Walking is good or join a gym/areobics class. Second I wish you could have someone to walk through this with you - someone just to care and listen while you talk. Often churches have people who are available to come along side and encourage with compassion. Call a church nearby and ask if they have a women who might be able to visit with you once a week just to support you by listening and walking through this time with you. Enquire about a weekly support group for caregivers. If none in your area, ask your husbands doctors if they know of others who are caretakers and might be interested in starting a group....maybe just go out for dinner or lunch together once a week. Hope some of the ideas you have received have been helpful for you. You seem to be a very capable and wise person.

I hear your pain. We are 81 & 80, so retired many years ago. He has LBD and Sleep Apnea. He usually sleeps 20 hours a day and, like your husband, is not hard to care for. Because of the loneliness, I chose to move us to assisted living. Now I have many friends and activities. Good luck to you.