Because of what I have read on the message boards and what has been happening in my own life as a caregiver, I decided it was definitely time to address caregiver isolation. Please carefully read today's blog that is posted on the home page - www.thealzheimerspouse.com - and discuss it here. I'd like to know if you feel as I have described in the blog and suggestions for what to do about it. This blog is the first in a series of 3 or 4. In subsequent blogs, I will discuss some solutions, but you are the experts, and I would like to read what you have to say. Thank you.
Joan, You are brilliant. I worry about you and hope you are okay under the circumstances. I am not completely there in my journey yet as you described, but I am more prepared because of you and the wonderful group of caregivers on your website. You have certainly done something so wonderful in spite of your heartbreak and despair. Both you and Sid are in my thoughts. Christine xo
What an interesting blog, thank you. We know that each person's journey is different yet alike in so many ways. Remembering the nights of sleeping with "one eye open" remains even two years later. Frank only seemed to wander after bedtime. He was either up getting ready to go to the airport or go fishing. My thoughts and prayers to those still on the journey. God bless you all.
I agree, this is brilliant topic for discussion. I know it will generate a lot of ideas. But I would suggest refining the topic further by removing the factors that are not essential to the subject of isolation: incontinence, refusal to take meds, aggression and use of obscenities, escaping/wandering, and shadowing. My husband had almost none of those problems - he did regularly escape, though - but I was still very isolated.
I think the isolation comes from the fact that our lives revolve around our spouses to the exclusion of other people and activities. Our spouses cannot be left alone in the house, any more than a young child can be left alone, even if the child is well-behaved and toilet-trained. There are too many things they can get into (whether dangerous or not) and too much risk that they will become fearful or upset. And what would happen if someone came to the door? So we are stuck taking care of what Joan aptly calls this "adult-sized special needs child," whether at home or while doing errands. Just as a young child becomes the center of a caretaking parent's world, our spouses become the center of our world. If you look at popular literature from the days before preschools and play groups -- the fifties and sixties -- you see many stories of suburban women being isolated all day with their young kids. That's what being an at-home spousal caregiver is like.
When my husband went into LTC six months ago, my life changed. I became free to go where I wanted to. At first I was like a long-term prisoner set free, fearful of venturing out too far, but gradually I began to reestablish my connections with the world. But isolation left its mark on me. I was an introverted person before caregiving forced me into isolation, and the habits I acquired during that time of solitude and confinement are hard to break. I don't leave the house as much, I'm wary of becoming too involved with other people and a lot of my pre-AD spontaneity and sense of fun have vanished. I don't know how much of that is caused by the isolation I experienced as opposed to just the horror and sadness of living with my husband's AD.
Joan you could have been writing my own story. with the exception of a 17hr day. mine went on for most of the 24hr period as getting them to stay asleep long enough for our own rest was almost impossible. because the sleep meds made mine worse -more anxious and ansy, so the options for medicating were not there. even benedryl was counterproductive. I used melatonin as best we could to see thru a few hrs sleep. and of course the shadowing for me was non stop. a continual stalking as long as he was awake. even used binoculars to keep me in sight from a distance of a few ft. the runner in mine had me on guard 24/7. until I discovered dead bolts on doors I was overwhelmed. it was exhausting to say the least. and yes the isolation becomes a constant as folks have their own lives and issues to deal. nobody wants to listen to someone elses problems and sadness. and I felt the same way. after a long stressful day I wasn't really in the mood to hear either their own problems on top of mine or to their vacation plans. it works both ways. after I hired the agency for a few hrs respite each week things started looking up. even today starting 15yrs of home care, I have a bit more freedom as mine is on hospice and out of the 'red zone' of getting into trouble on his own. its never ending worry over the long journey and now as we enter final countdowns, its still isolating and relentless. we just have to suck it up and move on best we can til the after and sincerely hope - from our friends here who certify it is possible, that we can manage a life in the hereafter. thanks again for a point blank look at the caregivers day. divvi
Excellent blog. I am looking forward to how to handle isolation once they are placed. Myrtle I can appreciate what you say as I placed my husband and am still wary of venturing out too far but it is much better than when he was home. I too basically am an introverted person and now I seem more introverted. My spontaneity seems to be missing. Everything I see as a responsibility that weighs on me--visiting him, paying bills, keeping up with the chores, working from home, grocery shopping. When I do something for myself it feels strange and foreign to me and often talk myself out of it because of the other responsibilities. I have made small steps. I signed up for a course at my church and am attending a play in early December through my senior center. I have also shortened my visits with him and do not feel guilty about that. I guess that is progress.
One of the main things that causes isolation for me is that by the time I've finished with caregiving responsibilities, I'm too tired to do anything else. No, not tired--completely exhausted. Just the thought that I need to shower and change clothes to leave the house is enough to bring tears to my eyes. I am going to need a very long time to physically and mentally convalesce from being a caregiver before I can even attempt to rejoin the world.
Another thing that challenges my interaction with the world is that, frankly, I don't live in that world any longer. Caregiving is so alien a life that there's almost no point of interaction. I guess I could occasionally talk about a television show we both watched, but that's not the kind of conversation I crave. I particularly like in-person interaction with other caregivers, because even if we're not specifically talking about caregiving, we know the whole back story. Nobody needs to explain anything. Once a month I meet with other caregivers for lunch. We deliberately don't talk about caregiving, and just have a nice lunch out. But it's nice that we all meet on common ground. Nobody talks about their spouse's big promotion or their wonderful vacation to an island resort. And nobody complains about the little aggravations of life, because we'd all like to trade our lives for those little aggravations.
The one positive thing I can say about this horrible journey is that the other caregivers I've met, both in person and on this website, have been outstanding, wonderful, caring and heroic people. After this is all over, I don't really think that I want to spend much time with any other kind of people. If that means I don't have much social interaction, that's okay with me. I've gotten pretty much used to being alone (even when DH is here with me). I do have interests I'd like to pursue, and plan to do that. But I think my days of trying to be social in the "other" world are over.
Jan, Good points. Friendship is formed out of common experiences and the fewer common experiences we have with others, the less likely we are to make or maintain friendships. In my case, even watching TV was an alien experience, for I used the television as a way of managing my husband. Instead of watching programs I was interested in, I would tune into shows with short story lines that did not require much memory or concentration - programs like Antiques Roadshow, Pawn Stars, American Pickers, etc. They were not programs I was interested in discussing with other people.
CO2, You're right about focusing on things that involve responsibilities - work, chores, paying bills, etc. I do that, too. I guess I spent so many years doing things I did not enjoy that I am stuck in that rut.
Jan K, thanks for your input. I think the one positive in placing the loved one is that the total exhaustion is somewhat lessened at least it was for me. When I no longer had the 24/7 care after several months I was not as exhausted and then was able to consider doing something for myself. My hesitancy to venture out is not so much a matter of physical energy but psychological. It feels safer to stay in my normal care taking responsibilities I guess because I have done it so long that change is hard for me. The other issue is the fact that I need to take the initiative to go do something and no friends to really invite to go with me. I have met people in my support group and have attended support groups for 6 years but as time goes on many of the people are dealing with their parents and not spouses and we all know there is a huge difference. Also the ones that are keeping their loved ones at home seem to have the need to recount the horrid behaviors that I really do not want to sit and listen to. I am really considering taking a break from the support group. I honestly get more support from this website than I do from support groups in person.
I felt my heart rate rising and felt quite nauseous while reading your blog. We are almost at the 6 year mark since placement and I do not often think about all the years of caregiving when I had Lynn at home with me. Our plight was much as Divvi described, it truly was 24/7. He had severe sundowning so the evening were the worst for me. He never did sleep much during the night and to this day I have trouble sleeping at night. Just thinking about the fires he started, the time he climbed out of the bedroom window in the middle of the Winter, the shadowing and worse for me the "lurking"... Wow, I could have an anxiety attack just thinking back on it.
Anyone who was here when I had to place Lynn will remember that it was my health the doctors were concerned with. I had a series of mini TIA strokes, 9 in one year.. and I was 40 years old. My neurologist was fearful I wouldn't live through the next one. That was my "eye opener"
Like most of us I too felt isolated, cut off from the world. The loneliness was more crippling for me though. Both I am sure played a role in the breakdown of mind, then body that I experienced.
I still have some anger at family and close friends who abandoned us, but mostly I am grateful for the ones who stood by us. I have come to realize over the years that to have good friends you must also be a good friend. I was a lousy friend. No, the phone didn't ring, but neither did I reach out to anyone. I guess I will accept my part in some of our relationships dissolving. I was frazzled, stressed beyond my limits, severely sleep deprived and I just had nothing left to give anyone else. Heck, if I could have, I would have run away from me too.
I really like what Jan said "The one positive thing I can say about this horrible journey is that the other caregivers I've met, both in person and on this website, have been outstanding, wonderful, caring and heroic people. After this is all over, I don't really think that I want to spend much time with any other kind of people." Yes! That is how I feel too. "Regular" people seem so superficial to me now.
As most others have already said you wrote their stories. My phone doesn't except when DH or someone calling to set up an appointment for him. The hurt that comes with abandonment is terrible. I don't understand how my family can just forget I am here or that I need care and attention in order to thrive. It really hurts. I read quite a bit and watch TV but I just can't get mobile. Just to much energy that I just don't have anymore.
You described so very many of my days before DH passed away - almost a year now. Days would go by without a phone call. I believe the isolation is the hardest part of this terrible journey.
Spot on blog, Joan. Thanks. Isolation is in abundance for me. On a recent Saturday around 5:00PM the phone rang. I was really hoping it was someone inviting me to go out to eat with them. It makes me sad to go alone and seeing all the older couples laughing and talking. That ship has sunk for me. The phone call turned out to be a telemarketer telling me I had been approved for a lifeline alert system! That just added to my isolated feelings. It just has to be okay because I do not want the fair weather friends or relatives that abandoned me during my home caregiving years to call. Fortunately, my DD an DS have not abandoned me but they lead busy family lives so I try to be happy when they do invite me to go shopping or to dinner. There are just so many days in between that are lonely. I must admit that I am happier with a telemarketer call that getting a call from the NH. What a life!
Alim, You reminded me of something. Years ago I got a call, it was a wrong number. The lady was nice about it and I could tell she did not just want to hang up. So we talked about 10 minutes. Now I am glad I took the time to talk. She may have been like us, alone. Funny I had not put two and two together till now.
It is coming up on a year without my DH. and I still spend most of my time alone. Hard to get back into the swing of things. I still miss him.
Joan, I do hope you have good days, and hope you know that we think of you. Thank you for all you do for us.
Great post Joan and everyone else. I truly do not know how I would be surviving this journey without this site and all of you. I feel all of you are the only people in the world who understand.
Like Nikki, I too felt my heart rate increase reading the typical day. Although my husband has been in a facility for two years and nine months, I regularly have flashbacks to horrid memories. Like others, I became so isolated and obsessed with trying to manage my husband and keep us both safe all of which fully exhausted me physically and emotionally.
All this time later, my role as a strong advocate continues. And I remain so changed from the woman I was prior to the onset and then ever escalating symptoms. My friends are gone and in many ways I understand why. I was not pleasant company due to my dismay and focus on what was happening with my husband and thus me.
I am now trying to put some energy into who I am now and what do I want for this next chapter of my life. At the same time, I have limited energy to do that work. So I go from day to day knowing trying to reach out is important and doing so at times. I am hesitant to make plans with people though as sometimes the event sounds great when booked but then on the day, I simply cannot muster up the energy like I used to be able to do. And then I have to cancel and that makes me sad and disappointed in myself. So I am trying to learn more self-compassion and regularly say to myself, "I am doing the very best I can."
Yep it is like that alright..and I did not have it nearly as bad as this description. It was the other health issues that were worse and had he not had those, which finally took his life, it would have been heading there...That said, the isolation was just what you described and save for about 2 dear devoted couples, there would have been no communication for me..my husband had some pals who still made the effort to go to lunch or breakfast with him and they did have a good time and I did get a breather for an hour or so. But since his death,nary a word from them, not even a how are you...but my 2 devoted couples and one other dear friend and her husband, have been right there.
So sorry, dog (and I hate to call you "dog") I'm sure you're a lovely person. I hope you are no longer feeling the isolation that you experienced when you were caring for your DH. I'm feeling the isolation more and more the further my DH declines and the more care he requires. Thank you Joan for putting into words what we are experiencing.