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My husband has vascular dementia and has had a stroke. He was recently hospitalized with pneumonia and had developed sepsis. He had hypoxic respiratory arrest and had to be intubated. As a result, his dementia is worse. I do still work; I have an extra office where he has a recliner and he plays "freecell" and naps during the day and I take him to lunch and am accessible to him (family owned business). However, when I'm home, I just can't get myself to do anything; I just feel so alone! We have no family near by; my son and his family moved to Arizona last year for his job. My brother (co-owner of the business) lives at least 100 miles away (we have more than one store). We only moved into this community 8 years ago before the stroke and have no connection to the community. It is a small town with no support system for adult care givers. If I stop working (I'm 67), I feel like I will completely fall into a depression. I know I'm getting to the place I'm not coping well, I just don't know what to do any more. My husband can still feed himself, dress himself (with a little help), brush his teeth, shave, go to the bathroom. He just forgets where things are...like tooth brush...refrigerator...clothing...etc. He forgets he had cataract surgery, so he insists on wearing glasses (I bought him clear safety glasses) and he loses them. I just can't get my energy back. He isn't hard to care for, I just feel so alone even though I visit with people at work. What do I do?

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Dear Ship Jean (((((hugs))))))! You sound so alone! I think that would make me feel somewhat hopeless as Well!

Have you been to the doctor Lately? Talked about this, possibly as a symptom of depression? Sometimes our brain chemistry gets out of whack and can be helped along with meds.

Do you get any respite? A couple of hours with no responsibility ( not work, not caregiving) might be energizing. Do you have access to that?
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Okay, I have heard at least 5 items here that are serious that feedback/help. Vascular dementia, stroke, pneumonia, and sepsis along with hypoxic respiratory arrest. The first two seem to be cardiac-related, and the latter three seem to be lung-related. Chest x-rays typically clear the patient or diagnose the lungs to ensure no fluid buildup in lungs, even after a fall occurs, as well as regular temperature checks which check for fever. On the subject of stroke, I am curious to know if this was TIA (transient ischemic attack, i.e. mini-stroke, warning stroke) or diagnosis of a more permanent stroke. Patients can have multiple TIAs that have vascular issues but never get diagnosed as having a stroke, so that may help to define with primary, i.e. TIA or stroke: there is a difference. The stroke/TIA diagnosis and vascular dementia seem to come hand-in-hand with cardiac patients with age after 60, but I know of many that are well into their late 80s that have had bypass surgeries, strokes, TIAs, start to wane a bit and some diagnosed with vascular dementia or alzheimers, etc, so age of patient/husband is interesting to know as well.

You are not alone because you feel alone, I think. Just my initial face-value thought. Some of it is: you are alone because you don't have those afflictions, so hard to empathize even when it is your husband. You could view it as the person with 5 serious health issues may even feel more alone than you, but hey, you are there, and you are taking care of him as best you can. The small town low-support adult care givers I think happens a lot, but you can still find a town 4 hours or less a way that may have a group where you could meet with for 1-2 hours if can get away and get feedback or additional insight. You would be surprised in just attending in one visit, less than 1.5 hours with other people that are going through this same type of ordeal. Before you know it, even after one visit. Those people miss you, because they think you're really engaged and they are interested in your experience of how great a job you are doing.

Cataract surgery: forgets. Who wants to remember that anyway, right :) Hey, and I think freecell can be tough, switch to solitaire. In final comment here: I think the vascular dementia and stroke (if it was a stroke or even TIA) is priority. Pneumonia in elderly is common knowledge to avoid, because even if you do not have the other two conditions, something treatable as pneumonia can be dangerous as a TIA or stroke.

Sounds like you are on top of your game and bringing your A-game. Easy to fall in line with the eating habits, sleep, cycle of the one you are caring for. That is why you set aside hours out of the day, where possible, to recharge and provide your own slice of happiness. Make it happen and keep being the good person you have already proved you are. Good luck!
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William89 Thanks for your answer. My husband had a hemorrhagic stroke in the occipital lobe. That caused the blindness in his right visual field...both eyes.

He just recently had pneumonia. We were coming home from Arizona and spent the night in Van Horn, TX. The next day just after leaving Van Horn, he had a full convulsive seizure; we were in the pickup 18 mi from Van Horn. I took him back to Van Horn where they found the pneumonia with sepsis; he was life flighted to El Paso where he was intubated because he had hypoxic respiratory failure on the flight to El Paso. In El Paso (Level 1 trauma center) he was found to have developed sepsis from the pneumonia, it was a bacterial infection. During his stay he had renal failure which reversed during his treatments. He continues to have high levels of ammonia from the sepsis. He is under current treatment by his family practitioner, his cardiologist, his neurologist, and will be seeing the gastrologist for the liver in a week.

He has had treatment for the TIA's that developed after his ablation for atrial fib. He had his left atrial appendage closed and the congenital hole between his right and left atria closed to prevent TIA's. He does not take blood thinners with the exception of aspirin because of the hemorrhagic stroke. He did have blood thinners during the treatment for sepsis because small blood clots form and he had a PIC line.

He has had prostate cancer with a 9+ Gleason score which was removed using robotic surgery and treated with radiation and anti-androgen therapy.

I take him to the doctors constantly for one of the many problems he has. In addition, I am receiving radiation treatments 3 x weekly for skin cancer on my face. I also work full-time. As a result of all the doctor appointments and treatments, I often work until late and don't get home until 8 pm or later. When the weekend arrives, I collapse for two days...my husband spends a lot of time sleeping, so that is my time off. Since I'm up at about 6 am during the week days and not home, the only "me time" would be on the week-end when he sleeps. I drive into Austin for some of his appointments and I get out as soon as possible. It is very stressful to deal with. If I weren't involved in a family business, I'd move closer to my son in Arizona. I am planning to retire next year.
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BarbBrooklyn, thanks so much for your answer. Yes, I see my doctor regularly because I have type II diabetes and yes, I am on an antidepressant...one that works very well for me. After trying several antidepressants, I had given up on finding an effective one. Then my doctor talked me into trying Viibryd and, to my surprise, it works great and it started working in about 5 days. My family practitioner also treats my husband, so I see her frequently and I can't say enough about how good she is. I feel very lucky to have her.
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William89 - I forgot to answer one of your concerns about my husband. Because he has dementia, he doesn't remember what any of his problems are. He sleeps a lot and when he wakes up, it's a whole new world for him. He's happy almost all the time; if he gets irritated at anything, it's over in a few minutes and goes back to being happy and forgets about anything he was irritated with. He can't remember what happened yesterday and usually can't remember what happened 10 - minutes ago. He just wants to be with me and he enjoys eating. He doesn't miss anyone and he isn't interested in going anywhere or doing anything, except eating. He watches TV with me, but he can't keep up with the plot, so I explain what's happening...which he promptly forgets. His needs are very simple. He went through a period two years ago where he was depressed, anxious, and angry. He was treated for that and as his dementia progresses, he is less aware of things going on around him. He will sit for hours and play freecell. I have his computer set up so he can choose from several other games, but he always wants freecell.

I'm grateful that he got through the "temper tantrum" stage and he is much easier to take care of. He has to use a walker because he is too unsteady, but he can still go to the bathroom alone.

He gets to see the people at work everyday, but he doesn't visit much anymore, because he just can't follow conversations. He will tell his little stories, exchange greetings, and then he lapses back into his little world. I see to it that he gets his meds, changes his clothes, takes his shower, brushes his teeth, etc because he loses track of everything.
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My mom also had a stroke that caused vascular dementia and my father has dementia as well. I was their live-in care giver for a year on and off. I understand how isolating this can be. I was fortunate to be able to move my parents closer to me and sort of get back to my family, but things are never quite the same as they were prior to my parent's illnesses. Are there support groups in your area? I find it's very helpful to talk to people who are experiencing the same or similar life experiences.
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Jean
You're a very strong woman - dealing with all those medical issues while on the road - yikes

Friendly chit chat with co workers isn't the same as having friends to do things with so when you have quiet time come to this site and chat with us - some of us like to joke around and might lighten the load a bit for you
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chrismsherman thanks for your response. There are no support groups out here. I would have to drive into Austin. I work about 45 minutes from where I live and from there it's another 30 minutes to Austin. If I am still taking care of my husband next year when I plan to retire, I'm thinking of forming a support group in our area. I may be able to do it at one of the churches.
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MsMadge thanks for your reply. I'm usually pretty calm in an emergency; I was a medic in the Army during Viet Nam, so I've had the background and training to deal with situations like this. I'm a problem solver by nature and my mind goes directly to a plan. I also live by the motto, "there's always a plan B and a plan C and a plan....you never give up and you never quit!".

Recently when I was visiting my son in Arizona, I heard him saying the same thing. He is in a job where he has to find solutions and that has become his motto....glad to know he learned something from me.

I also try to take the attitude that a situation isn't bad...it just is! It's God's world and he has a plan!

Thanks for your encouragement!
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Even though my dad was jewish, one of the leaders of a local church came to visit him every month!

Call the local churches as you too might find someone to visit once a month or weekly.
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Try going to your church community and join a senior group or a bible study. Connecting with God especially and His word is a Life savor.
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You're dealing with a lot and very little support for YOU. My husband has Vascular dementia and pretty much sounds like yours until the last year. He had two operations within several months apart and from then on it was constant supervision. His dementia went downhill with each set back. I never realized how taking care of him consumed my entire day until he fell and broke his hip at the end of May. After they operated on him, he was sent to a NH for rehab. After 21 days there, his coverage from Medicare was over and he still couldn't even stand. They used a lift to move him. He has been admitted to the long term care there and I had to file for Medicaid since we don't have the funds for self pay. So now I have been living alone and finally getting fully rested. It took a few weeks. I guess what I'm trying to say is that you don't realize what a drain on your body, both physically and mentally, looking after a loved one 24/7. I visit him once or twice a day now....the NH is less than a mile from our home. He misses me terribly and the separation has been hard since we have been married over 50 years. He's 82 years old and I'm 75. I look back now and wonder how I made it through the past year and a half with no one helping me out. I DID join an Alzheimer Support group near me and it has been a big help to me. My husband's social worker asked me how I was doing, and I could finally honestly say I was feeling good! I am so much more rested and I have quit crying at the drop of a hat. I hope you can find someone, either a neighbor, friend, or a volunteer from your church, who can at least sit with your husband while you go out for some time on your own. ....movie, dinner, pedicure, visit with a friend, whatever you like t o do. Sending you a big HUG because I know how it feels to walk that lonely walk. God bless you for taking such good care of your husband!!
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I know what it feels like to not be able to do anything. I believe this is from overwhelming life changes and deep chronic grief. Do you feel like you are in a fog? Who would have thought you would be taking care of your husband at such a young age. When you live in this constant grieving caregiving world then you lose a sense of yourself and your inner compass seems to disappear too. We don't know who we are anymore and we can not turn to the one who has always been there. You will come out the other side of this but for now I believe you just have to ride it out. For now you just have to be kind to yourself and find joy in the smallest of things.
My partner of 33 yrs. is going into a care facility within the next few weeks after being diagnosed with Alzheimers at age 57 (5 yrs. ago) Unsettling, distracting, loss of focus, lot's of sadness. How exhausting. I mean really, it is a lot for one human being who doesn't have family support.
Take care.    I know you feel alone.   It is a lonely time but you are supported by everyone out there who has been through similar circumstances.   I wish you strength and peace.
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shipjean, it is so nice to see an OP interacting with the responses, I don't see it much! Your doc should be able to prescribe a certain amount of in-home support visits, please take advantage of that. Then please find a CNA caregiver service and hire for some other in-home visits. Of course contact a local church and civic groups as well! I'd try all of them. Reach out, even to 'strangers,' and ask for support and company. Not because you can't do it alone, but because why do it alone! This I think is *how* you can make connections. I'm so glad you're on the right meds and taking such great care of yourself. Bring in others, even where it costs money. THIS is what money is for. I live alone and am a little isolated, and I'll say that the people I pay to do handy work, do animal visits, and clean my house have become good friends. They deserve some income for the caring tasks they provide, I love feeling like I create a little economy. Your husband sounds like someone very special indeed doing what he does, and you are off-the-charts cool - thank you for your service back then!! Now let other people shine by calling them into your life. Huge hugs.
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Hi Honey Shipjean!,
My family too has a business and I work there also. I am the last one from 4 generations. I take care of my Mama with Alzheimer's at her house. I just found this group and I have learned so much from everyone here. I bet you can find a group near you. My husband was in a fire 14 years ago and was put into a coma for 1 1/2 months. When he woke up he couldn't move his arms to eat, role over or anything. He had 2 small strokes and had aphasia. We live in such a small town South of Wichita that I helped the Dr. remove his pick line because I couldn't transport him up there. He has had 3 cornea transplants. That was a long road. He walks and is a construction superintendent again years later. I remember him always wanting to go eat so we spent a lot of time at the Dairy Queen. Its good you can still go to work and I'm so glad your man can use the computer. I remember once trying to lay down and sleep when my husband did and I just had to go outside and cry. Always remember this too shall pass. You won't be so alone on here. I see lots of friends already posted above! Just wanted you to feel like your not the only little cow in this big ole pasture today!
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Dear Shipjean:
I will approach our problem from a different side. I can speak from my experience only.
If through his life your husband was in control and making decisions. Now he has these conditions to cope with fear becomes a very big factor. If a person doesn't have to deal with fear and all of a sudden fear is there and he doesn't know what to do. One thing he knows is that something is wrong. He clings to you because you are his rock, he knows you and you do not cause him fear. This fear can be a paralyzing fear, raises blood pressure. anxiety. He knows that if he clings to you he will not be left behind.
There are state and federal agencies to help. If you like I would free of charge research this for your state and get a report to you. I am not joking or trying to scam you. I am offering to help the only way I know how.
Private message me to get my contact information, I will supply you with references if you want.
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Your respite care is VERY important! Like they instruct at the airlines; put on your own mask; then assist.
I'm a 24/7 caregiver to my mom. I have found respite care through our local Council on Aging. They have a dementia daycare. It's awesome!! A bus picks up mom; drops her off and I get 5 hours to clean, run errands and meet someone for lunch. COA is nationwide; check to see what your offers. Oh, and it's very affordable!! Check out yours!!
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Shipjean, why wait until you retire to start that support group? It would give you something to do outside the house and maybe help you connect with others. Do you have respite care? Someone to come in for a few hours while you get out? I used to think I couldn't afford it. Now I think I can't afford not to.
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It's not easy but there are ways to self-help. I have my family nearby whom I see often, but I live alone. I have many indoor interests though. I am interested in histories, world affairs, spiritual-people of interest I follow or documentaries. All this can be found on Google. I occasionally get into part-time work and have been in business half my life. I read biographies, mostly business, but generally of interesting people. You can maybe start a group or join a yoga group or perhaps even start group yoga with CD's. Or perhaps even a breakfast group. I am sorry that your husband is so unwell, and it can be restrictive in some ways, but an hour or two away with friends or hobbies, can be rewarding. I can recommend meditation, if you can get CD's to get into it. It worked very well for me during my depression. I refused medication. Yoga helped tremendously too with all the breathing exercises. Good luck and go well.
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No support Group? Then start one. All the national neurological foundations have free material you can order. (Now you have a library.) Search for podcasts that the group can watch. Ask nurses, doctors or pharmaceutical reps, to be speakers. Invite home builders to talk about home remodeling. Include Hospice speakers. You Department on Aging is a valuable resource. Put notices in doctors office asking carepartners to email you if interested. Find a free place for your meetings: church, senior center or library. Search the internet for articles on starting a support group. You are not along. You will soon have an army of strong, caring people around you. You will think back to this beginning and realize it was one of the amazing things you have done. My husband had Parkinson with dementia. This was a battle I did not want to fight alone, so I started our group. It has grown exponentially. Both knowledge and friendship have been the lasting benefits.
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Hi, Shipjean. I hear what you're saying. I have been my husband's caregiver for about 14 years. It started with a stroke and some resulting speech and mobility issues. It has progressed to the point he is now bedridden, incontinent (both ways) and unable to do anything but feed himself (and he makes a mess). He is 350lbs. and it's becoming impossible for me to pull and turn him so I can bathe him and change him. He was recently in hospital/rehab for 4 months and it was a vacation for me. I too am restless, depressed and more often than not, very lazy about my "other duties" like housecleaning and cooking.

My mother always told me "You have to make your own life." I hesitate to leave my husband alone because, God forbid, should there be a fire, he'd never get out. I lose myself in books, I purchased a knitting loom and one year, made 27 winter hats for people in need. I volunteered for a local animal rescue. I've been blessed with 2 grandsons and children who live locally. But, in the end, I know it's all up to me. See what help your community, Medicare or Social Security might provide. There is help if you reach out for it. Hugs!
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shipjean
Apparently you are a US Army Veteran, Thanks for your service. Is your husband also a veteran? If he is there are in home services available to him and you through the Veterans.

No matter what you are a Veteran and you need help. There are veterans out there looking for opportunists to continue serving by helping other veterans like you.
Try contacting the nearest VA center of outpatient center and ask to talk to a social worker. They are aware of all the services you are eligible for.
In addition contact the nearest VFW center they may be able to help as well.

I hope you find the help you need soon.
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The fact is caregiving is depressing work and it's going to eventually have an emotional affect on everyone who does the work. We watch loved one(s) slip away in health, lose a part of ourselves with it, and give up sometimes years of our lives to take care of people, often even being ridiculed by family members for it who are assuming we have a our hands in a cookie jar. We do it out of love, most of us, some have no choice, help usually is impossible to find, even those who are able to get a break every day for a few hours suffer from depression eventually to some degree. And many people don't even have anyone to talk to about caregiving with who can even remotely wrap their minds around it. I really think every caregiver should stay up on their own health and love themselves, treat yourselves in some way, reading is good, takes you away from caregiving while sitting in the same room, and it's affordable. Hire a health aide to come in once a week for a few hours if you can. Get a massage, I'd say get the nails done, but I can't do that either, no point if you're caregiving so I say hey get a pedicure.
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I am in the same situation you are. Isolated, lonely, etc. You HAVE to pick yourself up and make a life for your self. Find a hobby that you enjoy. I macrame and cook. I drive for meals on wheels 1 day a week. Exercise. Even if it's just walking around the block, get out of the house. I'm retired so I don't even have the escape of work. Check into his benefits and see if it includes any kind of home care for him. If it does, use it and go to the movies and dinner. Reach out to your co-workers for after hours friendship. There is much out there, but you must take the initative to find it. If you have insurance that offers counciling use it. There are support groups out there for caregivers, even if it's just over the internet. You must take care of yourself or you will eventually be of no use to your husband. You are in my thoughts.
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Shipjean...Most Independent Care homes have extra apartments they lease for respite. You could see if he would like to have a weekend in one of these and then you just go and DO YOUR THING for a couple of days. In addition, if you attend church, see if there is someone that can come in a couple of days and relieve you of your responsibility. When my husband died and then my partner died, I was exhausted. I asked the doctor for anti-depressants. I needed them. No shame in sharing your feelings with your doctor.
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Dear Shipjean:

Even though you are very devoted to your husband recognize that you need to provide for your own health. Respite care, where you can get a break even it is only a few hours at a time is crucial. Recognize that your physical and mental condition is so important when caring for someone else. If you can afford to consider hiring someone to help at home. Again, please take care of yourself.
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I'm sorry you're going through this. I can relate to the loneliness as my husband suffered permanent brain damage in an auto accident caused by a drunk driver. I took care of him for 35 years while trying to work and raise two children. I believe that the loneliness of caregiving, even with support groups, is that you are in mourning whether you're consciously aware of it or not.

When you lose someone to death, you acknowledge the period of grieving and eventually move on. Unfortunately, with family caregiving, that grieving period continues as you watch your loved one struggle and deteriorate. You're constantly mourning the loss of the person you knew with each setback. You don't get a chance to "settle in."

My strength came from my faith in God, knowing that I was not on the journey alone, that I was exactly where He wanted me to be, and I would have many opportunities to grow in faith. Remember, you are an example to others and they learn from you and how you handle adversity. You are a blessing to others!

After a year of reflection following my husband's passing in 2012, I realized how much I had learned and started a "Care for the Caregiver" class at my church. It was a tremendous help to people. I've recently started a blog for the same purpose and am writing a book for family caregivers.

I'm sorry this post is so long, but I felt a need to share this with you. Sometimes it's hard to recognize the blessings that come to us in the form of friends, hugs, humor, etc. unless we're consciously looking for it. I still felt periods of loneliness, but was able to move on. And yes, I took anti-depressants, too.

You will be blessed for your love and compassion to your husband, just as you are a blessing to him. You're doing a wonderful job caring for him and I admire you for your commitment. 'Wishing you the best with a big (((HUG)))!
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Shipjean,
What a blessing you are to your husband!! What a blessing that he has you. I am not caring for a spouse but rather, have been caring for my two aged parents. My dad passed 2 1/2 years ago, & my 93 yr old mom is doing very well, but has a serious health issue that we are currently dealing with. I think what you said is key- it is part of God's plan!! Even so, to me- there is a deep loneliness & isolation that I experience daily, even among family members. I believe that people can empathize & sympathize, but don't truly understand what a caregiver endures when we take care of a loved one... the day to day responsibilities, emergency hospital visits & constant stress of being vigilant on their behalf. While I love my mom & do not consider her burdensome, it is on the flip side- stressful & can take its toll. I'd highly recommend maybe reaching out to your local Bible teaching church!! You could use some good prayer warriors in your corner. I believe that caregiving for our family- in your case, your spouse, is very much in the will of God. In saying that, I also believe that He provides for those who are answering this high call to do His will. He knows your heart & circumstances & please know that I am praying for you, too!! 2 Thessalonians 3:13 But as for you, brethren, do not grow weary of doing good. I'm praying that He will give you much needed rest in your heart & also, through friendship & help from others. Thank you for sharing!!
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You say you want to start a support group in a year when you retire. Start the support group now. Other local caregivers are probably in the same situation. You could caregive for each other for a few hours each week. Some in our support group here do that. If you don't have time to start the group because you work, hire someone to work part-time at your store. Maybe phase yourself out of the business & retire earlier.
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Shipjean, you are an aware, articulate and compassionate caregiver who your husband is lucky to have.
I agree with all of the recommendations about starting your own support group.
I'm so glad you've found a good med, but agree that the chronic isolation and care-giving strain must be so soul-deadening.
Somehow, even though this is an amazing source of support, cyber connections don't really supplant the need for one-on-one time with another human.
Is there a Yoga studio, Church or Meetup group that might interest you? Meetup is a great way to connect with locals with similar interests. Perhaps join a hiking Meetup so that your focus isn't so much about caregiver stress but on just getting out and enjoying nature. With time, you'll forge connections and will be keeping your body moving at the same time.
Thanks for all of your openness and for reaching out!
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