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

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.

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?

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!

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.

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!

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

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.

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.

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.

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.