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?
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?
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!
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.
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!
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
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.
Call the local churches as you too might find someone to visit once a month or weekly.
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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