Caregiver stress

[Pepper]

I wonder - could we believe we are holding up very well and then stress creeps up on us unaware? I usually am able to cry the necessary tears only and then keep going, isolating feelings. Recently, I would find myself needing to cry and once I start, I could not stop. I am essentially alone apart from hospice help. My husband's daughters does not want anything to do with him, they do not return calls. They like me a lot but not their father hence they do not return calls. My family do not like him also and prefer not to hear too much about him and Als which is unnerving for them. Hence hospice is about my main and only support. I googled and found we could get affected psychologically. It makes me determine to save myself - again by compartmentalizing. Due to a very wounded past, I am a pro at that. But because of that also, I learned layers and layers of hurt could accumulate till it erupts one day and one realize there is more there than one realize. It came to me, stress can be the same way.

In a way it is harder for me because due to his make up as a person, my husband is not the type who would think of others or feel for others. It is up to me to take care of myself. He is not nurturing and would not even know how to think of me. Now you can see why I need to remain incognito to be freer to share. My husband to his daughters and my siblings is not someone I should cry for or feel compassion for. I do cry for him and do feel compassion for him. It is a strange situation to be in. I knew when I was 42 I should leave him. I could not bring myself to and life was comfortable enough and I did not. He has frontal lobe dementia which makes him gentle, and sweet. The nurses love him and it is this gentle sweet person, incapable fo meanness I see and often forget the past till I am reminded of it.

I do laugh a lot and easily and will use that as a tool apart from my gardening, and meditation.

 

[Katie C]

I am fascinated by your comment that frontal lobe dementia has made your husband gentle and sweet... generally FTD does just the opposite. Anyway.. it sounds like you might be helped by either some counselling or a support group.. I'm sure the hospice nurse could point you in the right direction. I know that our hospice also included a chaplain and a counsellor that my son and I could contact any time.. hospice was for the whole family, not just for Glen.

 

[Miss]

I was told / warned that this type of caregiving usually will cause some level of PTSD (post tramatic stress disorder) after all is said and done. Certainly, I can see how this happens. Even though we have an extensive network of family and friends, the caregiving is soley in my court right now. To say it is exhausting is such an understatement! Just know that you are lucky to have a gentle, sweet patient! I would say that that is clearly not the norm!

 

[Pepper]

Katie C., I pray my husband stays that way. It is like his harder mean side drain away. His memory is still quite good. He does not want to know what Als is, and does not want to read anything here. Hence as he loses his speech more and more, I would tell him about what I read here. He did not cry as much losing ability to eat. He did not appear to miss it but losing his speech gets to him, he cries daily, soundless crying. I contacted local ALS support group on how to get speech device. The person in charge sounds very nice. She will work on getting one on loan and visit us next Thursday. She leads support group hence I might go to the sessions for carers and get some help there. Nobody looking at me would know I have a hard time approaching anyone much less for help. I will start with the volunteer to stay with my husband while I go for longer than usual errands. I have been going to post office and back, staying in the entire day.

 

[Katie C]

Pepper.. FTD can be very isolating for caregivers since you're never quite sure what he's going to say to whom. I wholeheartedly encourage you to follow through and get those breaks when you can. I didn't really realize how isolated we'd become until I started trying to rebuild my own life.

Missy.. there is definitly some post traumatic stress involved! Having everything suddenly be over is.. well.. weird. My son and I have a wonderful grief counsellor who has helped us tremendously. She also constantly reminds us that the fact that we also lost my mother, my brother, my mother in law and an uncle in the past 12 months increases the rebuilding period exponentially. Being able to come here and maybe help someone else with what I might have learned is also therapeutic.

 

[Miss]

Katie, I lost my mother a year ago. I am so thankful that she did not know what my husband and I were about to face, but BOY do I wish she were here to help me get through this. I know what you mean about being isolated. I feel very, very alone sometimes.

 

[Marjorie R. Wilcox]

It's such a shame that when the going gets tough, family and friends desert us. As a caregiver many times, I see that we have to be understanding to those also, who just can't take it. I know they are selfish cowards, but tenderness and care brings more out of them than resentment........I was once asked by my long ago classmate who lives out of state... if I would care for her mother as she dies. My classmate related that she just loved her mother SO much she couldn't be near to help and give care because she just couldn't take it. I was astonished at first, but then did the job. I was so graciously thanked and appreciated, but it took a long time to even begin to understand it.

I know some people can't stand the sight of blood. I know some can't look upon deformity. etc.... and we are not all caregivers.

 

[pepsiman]

Marjorie, your take on caregiving is very interesting to me. As are those who "just can't do it". I am most decidedly not caregiver material. And yet I performed the role, for my wife Liz, right up to the end. I will never say it was the most rewarding thing I did, or that I derived any sort of deep satisfaction from it. I did it because it was my duty as the man she married. It was the very essence of the promise I made on that August day 20 years ago. I loved her, with all my heart. I suppose I could have found someone else to take care of her and spared myself the pain (both physical and emotional). Eventually, I did find some help, for short periods of time twice a week. Until the day she died though, I was her primary caregiver. I believe in my heart that I was the only one in the world that cared enough for her, to be that caregiver. I felt from early on that I was the only one she trusted enough.

It is a very high stress situation. I think moreso when the caregiver is a loved one, as that adds an emotional component to the stress that perhaps wouldn't be there for a paid (or volunteer) caregiver. On the other hand providing care for someone in such a situation is the ultimate display of love. I don't fault those that choose to back away from the situation, but I think they are losing out on an opportunity for growth that they may never see again. Would I do it again? For Liz? In a heartbeat. For someone else? Probably not, unless it was one of my children. For one of my sisters, or my mother? I really don't know at this point. I felt completely abandoned by my family. While I don't hold grudges, I'm not sure that I would be able to overcome that history to become a caregiver to one of them now. Lots and lots of conflicting emotions attached to caregiving. In the best of situations it's physically demanding and emotionally heartbreaking but I believe it may well have been the most important thing I have ever done or will ever do.

Dick

 

[Miss]

Dick,

You expressed my sentiments about caregiving to a tea. That is exactly how I feel about it. It is not something I would have chosen as an occupation. I do it because 21 years ago on a warm July day, I made a promise. My husband made the same promise, and I like to think he would do the same for me if the situation were reversed.

 

[Katie C]

Glen's family pretty much vanished off the planet, especially after their mother died. I did invite them to stop by.. .they were of the "I can't handle it" ilk. My family was there for me, even through the deaths of my mom and brother. My surviving brother was with us when Glen died and next to me every step of the way through the planning and funeral. It is interesting taking a step back and watching how different people react.

 

[Pepper]

My marriage was a marriage of convenience. At the time all I was looking for was a man I could grow to love. I decided I could grow to love my husband and got married. One day, it was like overnight I woke up and thought, this is a stranger, I do not know him. I know him to be what he said he is but I do not know him. That was when I would have left were I able to. I could not do it and did not. I often thought it is so painful for me watching his decline, how must it be were it one's loved ones. It would be doubly killing. I did and do cry for him and find it most natural taking care of him. Plus as I said, he became so sweet and gentle, it is easy to care for him and take care of him. My only fear is the day when he becomes paralyze. I could not afford more care than what the hospice gives us but I will worry about that when it happens. I do chat with a cashier at a thriftstore once a week when I go there. It is like my only break. She told me, "You do not want to ruin your back for him." It came to me yesterday, I could put it like - I do not want to ruin my health for him. I do take care of myself physically and mentally, for instance going to bed at 8 pm last night.

Miss, I believe I might have some of that, PTSD, certain situations can trigger on trauma. I use awareness to deal with it. Look at myself, situation and everything with full awareness. It helps.

 

[LornaDoone]

It's such a shame that when the going gets tough, family and friends desert us. As a caregiver many times, I see that we have to be understanding to those also, who just can't take it. I know they are selfish cowards, but tenderness and care brings more out of them than resentment.

I do not think that selfish coward is appropriate here at all. Some people avoid and may be downright rude to a relative with an illness like this. But you are not qualified to judge anybody unless you are in their exact shoes. Perhaps there are past family issues we are unaware of. We have no idea what goes on insides a persons head and any personal hell they may be going through.

While you may very well be correct, you may very well be wrong and making those blanket statements are not fair.

 

[Iloveocean]

I really wanted to thank everyone who contributed to this thread. I have reread it many times. It got me really thinking about how the thirteen years of my marriage affected my thinking. It has been thirteen years of everyday pain and restrictions. Some of my husband's surgeries happened right in front of me in the ER. Do I have PTSD? I don't know but I have been trying to identify the effects of my husband's frail health on the way I think and feel all day. It helps me just to realize that the effects are there. So thanks again.

 

[Pepper]

In a strange way, being a caregiver reveals one side of me I did not know I have, that of a carer. It comes natural to me. It makes me think about training to go into that field and work in that field one day. Accidents, drooling, catheter bag, none of that bother me much. It becomes a valuable lesson for me watching how the nurse aid gives my husband bed bath and all.

I believe I do have some PTSD. It was the way I found out about Als, googling at 5 am in the morning, alone in the dark and the first article I opened on it had to be a stark one on Als. Reading it, it was like I was experiencing the full horror of it. Every time I thought of it, I would cry until I came here and read here. I still cry but not that way, I believe the terror of the disease lessens, especially reading posts of PALS here. One thing I do notice, it makes one so easily teary. I was reading about the brave 16 year old who died of cancer and he cared about his team to his last breath. His friend was crying as he talked and I found myself crying with him. It is like carrying an open wound, closed over most of the time and easily pricked - and the blood flows again. Or sometimes it would come on just like that. I walked out of Safeway yesterday and wanted to cry so badly, needed to cry so badly.

 

[brooksea]

Dick, thank you for your frankness!