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.

[darylwlenka]

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!

[darylwlenka]

I read this thread again as I am working through my reactions to my husband's health issues. The question I have, should we all as human beings be capable of caring for others? I am not trying to be controversial, I am seriously thinking.

[Pepper]

From my sisters, I can tell it is different for each person. For instance, my youngest sister and I do not have much difficulty cleaning up accidents. For another sister, it is the most awful thing to do. Hence for her, such care of another person is heroic while for me, it is no big deal. I guess that is how some experience a calling to be a nurse, another would not dream of being one or get near a hospital, much less being a nurse. People look at me and tell me I am strong, I do not feel it, I tell them it is the meditation. It gives one inner strength. Inner reserves of strength.

[Pepper]

I feel dead inside, like willing the worst to come. Like daring the enemy to come. Come and I will deal with you. It is like waiting for the axe to fall and when it falls, one feels almost a sense of relief. My husband is displaying more states of dementia. He does not sleep at night, fidgets, makes noise all night when he is not sleeping. I am able to tell when he is in that mode or when he is himself. That is what I mean by daring the worst to come. How many layers we have and modes. One moment it is this mode in operation and another moment it is another. One mode is this - ironclad. The other when the walls of defences broke and one cries and cries, unable to stop. I had a very wounded past, compartmentalizing comes natural to me. In crisis, I go into frozen mode. One time I read about a woman with cancer - fighting it like an enemy. I understand how she feels today. There is no worst enemy than Als, the slowly crippling enemy, slowly, progressing taking everything away yet it cannot take one thing away, the mind as Stephen Hawkins shows. He lives 30 in that prison of his body. He lives more in his mind than body.

[pepsiman]

darylwlenka,

I don't know how we would be able to properly care for our children if we didn't have the ability to care for other humans. That said, there are different degrees of compassion. Caring for an incapacitated adult is infinitely more difficult than caring for a baby. I didn't find any of the day to day struggles particularly difficult or disgusting. Life's messy. Watching someone you love slowly wither away is an entirely different matter. It was painful, emotionally and physically for several months. Then I became like Pepper says, dead inside. I seemingly lost the ability to cry or feel much of anything. The caregiving became my daily chore, like I was some detached being just doing what I had to do to survive. I look back on it now and believe it was probably, at least in part, because for the better part of a year I never got more than three hours of sleep a night. But it was also undoubtedly a coping mechanism. Cold detachment gave me the tools I needed to do all that needed to be done every day. I wouldn't recommend it as a method of coping, but on the other hand I'm still sane, I think. The flood of emotion that came after she died though, that's something I wasn't prepared for in the least. I am a changed man for the experience. Most of the changes are for the good, but they weren't worth the cost.

Dick

[LornaDoone]

I read this thread again as I am working through my reactions to my husband's health issues. The question I have, should we all as human beings be capable of caring for others? I am not trying to be controversial, I am seriously thinking.

I believe that we all have our special talents. Being a Caregiver, being in law enforcement, politician, chef, etc.. We can not be all things as much as we may want to.

[LornaDoone]

I've been thinking quite a bit about this. I wanted to add that although one of your special talents may not involve being a caregiver, sometimes life throws you things and you need to just do what needs to be done. Some people are very fortunate to have all the help they want. Some people choose to have minimal help and some people have no choice. It's really quite amazing what you can do when you have to though.

[Pepper]

Dick, it helps me so much knowing you went through that - feeling dead inside. You describe so well that process.

What about anxieties? My mother always told me I have the easiest life, happy go lucky, not a worry in life. Now I find myself afraid of everything, of tenants, of phoning the volunteer, small things. I became aware of it recently and realize it is part of it, anxieties, with everything so uncertain... the what ifs which I push to the back of my mind but always there.

I gave him 25 mg quetiapine last night. He tossed and turned for over an hour, feet kicking, body pushing up. I phoned the hospice nurse who told me to give him another 25 mg. I did not dare at that point. She told me to give him vicodin. He slowly calmed and slept. He is still sleeping. He slept all day yesterday, last night and into today.

[darylwlenka]

Dick,

your honesty brings me relief. How are you feeling and doing now? Thanks!

[joelc]

I talked myself out of saying this several times but I will say my peace as well.

This only applies to spouses who are CALS.
What ever happened to marriage vows? You know, the one that says - for better or worse, in sickness and health.

These vows don't make provision for anyone to opt out because it is too hard or they don't feel they can do it. I agree, some people have an easier time stepping up to the challenge but there is not an escape clause if anyone finds it too hard. From watching my wife I know she does not enjoy what is happening, we both had an entirely different idea how we were going to spend this time of our lives together but there is no thought of her leaving me because she does not want to look after me. She does not want to do this but she is sticking around anyway. I know for a fact I would be there for her if she was the one going through this instead of me. Would I like it? NO, but I would be there for her without thinking about it.

We were not promised a bed of roses and we made a commitment to each other that does not have an escape clause. We meant our wedding vows and will honor them until death. We don't have to like everything that happens. I admire Dick as he was there for his wife, it was hard and not enjoyable but he was there for her with no thought of abandoning her. That is what love is all about.

I likely upset some people but I make no apology because I feel that strongly about what I have said.

[pepsiman]

Pepper, I can't really say I had any more anxieties before, during or after Liz passed. I'm a father of four so I've always had a certain amount of anxiety about the future. We were a dual income family and worries about how we would manage as things progressed was constantly on my mind. ALS is a very expensive disease. My biggest fear was having to leave my job to care for Liz. Fortunately, my employer really stepped up and made it possible for me to work from home. Still, I was anxious most of the time about that uncertain future. That same stone cold practicality that made me able to make sure everything got done for Liz though, to keep her safe and as comfortable as possible, also let me just push the anxieties off until "sometime in the future". Liz died before I had to face most of those anxieties. I would have been better off just letting the "chips fall where they may". That's hard though, for someone that has always been a long term planner.

Darylwlenka, How am I doing now? Well, I'm certainly not dead inside anymore. Emotions are still a little close to the surface on occasion. Overall though, I'm okay. Life is slowly finding a new normal. It's different, I have to think of things that never occurred to me before but I give myself a B or maybe even a B+ in the single parent scoring system.

My oldest daughter went off to college in August. Her sister will be going next August. I have a 15 year old boy in Crew and an 11 year old boy that's off the charts intellectually. I can't keep up with any of them. They are all good kids though, responsible, healthy and seem very well adjusted. They all have a maturity you don't see in kids nowadays (frequently don't see in adults either). I think it's a testimony to how they were raised from the time they were babies rather than anything I've done since Liz got sick though. Sure, I have become a better Dad, but I always thought Liz was the best Mom a kid could have. She prepared our kids for an independent life long before she got sick. Continuing on that path has been easy with the groundwork she laid a long time ago.

Dick

[LornaDoone]

I talked myself out of saying this several times but I will say my peace as well.

This only applies to spouses who are CALS.
What ever happened to marriage vows? You know, the one that says - for better or worse, in sickness and health.

These vows don't make provision for anyone to opt out because it is too hard or they don't feel they can do it.....

Do you feel that you have to take on the role of primary caregiver for your spouse in order to fulfill that obligation?

Personally, I do not. I feel like it is your job and duty to make sure your loved one is properly taken care of. Whether the two of you choose to keep in within your family, hire outside help, whatever. I think that a spouse can totally remain true to their commitment as long as the needs are being met. Nobody should be telling anybody else if they are fulfilling their commitment or not.

In my not so humble opinion.. ha ha.. I've met some PALS that are adamant that their spouse or family take care of them. Refusing outside help.

This happened with us for quite awhile. There was no other issue than the comfort level of the PALS. When our PALS was ready, we jumped at the chance. This does not mean that her husband is any lesser of a husband by any means for not taking on the primary caregiver role. This was a HUGE struggle for him. People assuming that it was his duty to do it when he was not comfortable with it. I said, how dare anybody tell you how to care for your wife. Seriously..

[mrsack]

Touche' Mandolyn

[Miss]

I am with you, Joel. The vows that I took are the only reason I have assumed this hienous role. I don't think I could do it for anyone other than my parents, husband or children. I wish I had the "caregiver" part that those who see it as a calling have, but I don't. I am infinitely more comfortable with the tasks, but I still hate doing them. Very often, I too feel dead inside like Dick and Pepper. Still, I wake up every morning, and begin again.

[stephie]

Joel,
Unfortunately, it seems that many people do not take marriage vows seriously, ALS or not. I never entertained the thought of not taking care of my husband, even though it is not a job I enjoy. I would much rather have remained his "wife" than becoming his "caregiver," but those are not the cards we were dealt. I am responsible for his care and I work hard to make sure he has everything he wants or needs. He still has a responsibility to care for me, though, too. There are still 2 spouses in this marriage! If it ever got to the point that he saw I could not handle it anymore, I hope he would welcome outside help for my sake.

[abbas child]

Pepper, I'm a Hallmark card commercial. Anything sad or funny brings tears. You caregivers are wonderful and we love you. Incidentally, my husband told me when we were married I could have a cat but he'd never be able to change the litter. He meant it. Gross stuff made him very queasy. He's doing great and doing the "impossible" for me. I believe if asked earlier, both he and I would have said he was not able to do this. We'd have been wrong. Love conquers a whole lot.
Love,
Ann... who just realized there is a page two. Sigh. I am slowww.

[SMillheiser]

You people are absolute saints. In my "work" I've seen so many PALS who were abandoned by spouse and family, only to be warehoused in nursing homes from hell. I've come to know Dick fairly well. When Liz died, he donated her van to my foundation. I was incredulous. But knowing how he took care of Liz while earning a living and raisng five kids, I shouldn't have been. My guess is that his decency is hardwired, and extends to other situations he faces in life. My sense is that all of you are wired similarly. Its called empathy.

Please don't hesitate to contact me if you need a break. Our website is ALSGuardianAngels.com. Click the "GRANTS" button. If you can't afford to take a break from your caregiving responsiblities, we are here for you. Don't feel uncomfortable. This is what I WANT to do.

Stu Angels4ALS@aol.com 949-488-9894

[joelc]

Please don't misinterpret what I was saying. I was not suggesting that it is only one sided, as a PALS I am very sensitive to my wife's needs and try to make her life as comfortable as possible. We got everything in place to make her life as easy as possible before I needed them. I pushed her to let me advertise for caregivers, and we have 2 now, so she could have time to herself and get a break. I did not expect her to do it all by herself without help.

I don't enjoy having caregivers but I did it for her and have accepted I need to do that for her health. I did not say the spouse had to do everything themselves, it is quite acceptable to have help and very needed. No one likes having this disease, that goes equally for CALS as well as PALS. I have always said this disease is harder on a CALS. I can't imagine watching a loved one deteriorate and not be able to stop it.

All I meant was life isn't always beautiful and we made a commitment to stick together through the good and the bad. That does not mean it will be easy or enjoyable but it means we will be there for each other regardless.

I have a great deal of admiration and appreciation for all the CALS that stick beside their PALS. God Bless you! Merry Christmas to everyone!

[David_W]

Dick (pepsiman):
Thank you for sharing your thoughts in this thread. I've read them each a couple times now, and I'm humbled by your ability to look inward with such honesty at a deeply personal and raw experience. The candor and sincerity in your posts gives them a power and eloquence that is quite moving and even befitting, given the depth of your experience caring for your wife.

The choices we all make often have an impact far beyond anything we anticipate or intend. Thank you for choosing to share your thoughts here. They've had an impact on me.

David_W

[Marjorie R. Wilcox]

pepsiman, I am just getting to reading what you wrote above. I've been out of town a few days.
It is SO true what you wrote and you are exactly where it's at. One never knows what they can do until they are put in the situation where they are needed. But it is true that your true colors will show at that time.

When I took care of Rick for 9 months after the explosion almost took his leg, I was asked how I could do the care. It included minor surgeries each day for a week, daily cleaning and medicating in the hole etc etc... I won't be graphic here and make anyone sick. I was asked how I could do those things because I love him and it must make it difficult. I found out that BECAUSE I love him, it made it easy. You know, neither of us could look right at the leg.... it took a few weeks before we could give it more than a glance... but we did the care faithfully.

Caregivers do get burnout, of course. And I have PTSD for four different reasons. I have severe arthritis and carpal tunnel.. but they are all over-rated and I keep working on and on. I am the only one here that can and MUST>

[Pepper]

Ann, you are right about that, love conquers all. I tested myself sometimes, if one my siblings need a kidney, would I do it? In an instant without thought.

Talking about funny and sad. My mother has a knack of finding humor in sad situation, I find myself inheriting a little of that. Around 3 weeks ago, I heard a noise and feared the worst. I entered the bedroom, my husband was on the floor, blood all over the floor, blood on his hand, and blood flowing from a big opening on his head. I rushed to the phone and called 911, entire being gripped by the feeling of emergency. Later I learned he lost his balance and fell, hitting his head against the marble like counter of the bathroom. In no time at all, 4 big firemen entered the house. By this time, my husband let out everything, poo combined with blood on the floor. They carefully placed him on a towel and in his wheelchair. As they wheeled him out, one of them was telling me, urgency in his voice, - "His urine is spraying all over the place, do something." Obviously he had no idea what to do or how to stop it. I hurried over to examine his catheter bag. The plastic stopper had gotten broken with his fall, I went for a rubber band, folded the rubber tubing and tied it up, effectively stopping the flow. Later I laughed, one would think 911 people are able to deal with any and every emergency, - just not spraying urine. They soon ascertain it was not life threatening and called the ambulance. The 4 big men were really nice, the head especially, he was so calm. My husband was lucky, there was no internal bleeding. Now that it was over, recounting it, I still laughed at the idea of big firemen, undone by urine spraying all over the house. Sometimes that is what helps one keep sanity, finding humor in sad tragic situation.

[Pepper]

Dick, what strike me are your words - that you love Liz with all your heart. That is so touching, able to say that. To watch someone you love so much being slowly taken by this disease has to be so painful. I cannot imagine it.

I read about the Suicide Tourist here and watched it on hulu.com Stone cold practicality is what his wife was demonstrating. On the day of his suicide, she acted like it was any other day. She voiced it herself, that people wonder at her being that way. She went on to say, they do not realize, it has been going on for months... Something of that nature. She said either she cries or stay strong. She is no use to him crying so she stayed strong and matter factly. The movie helps me a lot in that area. I would not be surprised if the nurses thought the same of me - till one Sunday, I lost it. I called the hospice and could not control the crying. Second day, the nurse talked over half an hour with me, very concerned about me. I continue on the same route with one difference, aware of that pitfall and avoiding it.

[pepsiman]

Well, thank you all for the kind words.

I still stop by the center in Albany occasionally. Last week I brought a check donated by one of my supervisors (several levels above me) and just happened to catch the director in a moment of spare time. She pulled me aside, sat me down and we proceeded to talk about my experience. For an hour and a half. At the end she suggested I think about volunteering my time to help others cope. I'm still mulling it over.....

While the staff at the center always treated me with the utmost respect, I think most of them really didn't know what to think. On one hand here I was, obviously taking good care of my wife. On the other, I showed no emotion whatsoever. The kids were never brought along. All other aspects of life seemed perfectly normal. We discussed the various changes that had come about since the last appointment. Occasionally I contacted Susie and made a trip down to pick up some new equipment to make life easier. Really, everything was done just sort of matter of factly. Life goes on and today this needs to be done. There just wasn't time or room in my schedule to fall apart. Our last clinic appointment was probably the only time anyone ever saw what was really going on with me.

We had been in a meeting with Susie and the subject of a hospital bed came up. Liz was adamant about what she wanted (a queen size Flexabed). I made the mistake of asking why. I thought I was making an innocent point, since we didn't sleep in the same bed anyway. Liz (at this time her ability to communicate was still pretty good) blew off the handle. She threw all sorts of accusations at me that I was depressed and needed to see a therapist but wouldn't go, on and on. I offered to go right away. Turns out the clinic therapist just happened to be in the building. I spent two hours talking with him. Still no tears, but I calmly explained everything I was going through, why I felt the way I did, and just how difficult it all was. He couldn't find any reason to believe I was depressed either. People cope in different ways. Cold detachment was the way I did it. I have no doubt that when I left his office he knew exactly how I felt about Liz and why I acted the way I did.

I still wonder if maybe Liz never really understood how I felt even though I had told her early on that I would do whatever it took to keep her home with her kids. It never even occured to me that maybe there was an option to put her in a home. She mentioned it once, in passing, fairly early on. I wouldn't have done it, I couldn't have done that to her or to our kids. I don't think me being sole caregiver for so long was a good decision. I just didn't feel I had a choice. The agencies that provide home health care around here cost $40/hour. Insurance doesn't pay for any of that. Besides, Liz wasn't comfortable with someone else doing that stuff and frankly, after raising four babies, what's the big deal anyway? Still, handling a completely paralyzed adult is physically demanding. And women need to use the bathroom A LOT. Eventually, I did find a nurse that came in for $20/hour twice a week for four hour shifts. Liz loved Coleen and I got a break. I wish I had found her three months earlier.

Anyway, I've rambled on and on. It's tough, do the best you can. Give yourself a break for not being superhuman. Your PALS know what you're going through, they just don't have the option of saying "I'll take it from here".

Dick

[abbas child]

Dick, you continue to amaze me with your thoughts. I think we all probably learn something from reading your posts, describing your experiences and your thought processes. (I do find this one funny: "And women need to use the bathroom A LOT." Yep. We also pee slower.) You said you don't think being Liz's sole caregiver for so long was best, speaking in hindsight, and wished you'd found Coleen earlier. I remember early into my diagnosis, over at PLM, I made friends with a woman who was nearing the end. I was so concerned about the future and Phil having to clean me up and deal with his personal bugaboo. This woman had a live in caregiver. She told me she wished she'd not told her husband he was the "world's best caregiver" so much, but just told him he was the best husband and the best lover. I took it to heart. So far, anyway, I don't call Phil the best caregiver (he's mighty good), but just stick with the marriage "bests". I believe when possible, allowing outsiders to do at least some of the caregiving has got to be helpful in maintaining the marriage relationship. At least up to now, this is my belief. There are still miles to go....

[Pepper]

When I first came to this country, I volunteered at a geriatric center. I made it very clear to the nun in charge, I do not want to do things like lay the tables, that be hired, I want to do something that cannot be hired done, which was to spend time chatting with patients. It came to me there is a little similarity here. Such work can be hired done but to be there for the PALS, to give time, attention, loving, those one cannot hired done. My husband is on hospice care hence a nurse do come to give him bed bath 3 times a week. I could do it easily. I do not feel I have to do it myself though it looks funny sometimes as I help the nurse. If he is not on medicare and I am loaded and can hired all that done, it actually could free me up even more to be there for my husband, without worrying about getting run down. I did get run down the past week when he did not sleep at all at night. The nurse finally found him quetiapine which helps him sleep at night.

[LauraW]

I am so touched by all of your experiences and your heartfelt words. For me, it was never a question of what will we do? I didn't even have to think about it. Fortunately I have a wonderful supporting husband who knew and understood from the beginning that I would always be here for my parents. The choice of a nursing home or a caregiver was never even thought about for a long term situation. I have relatives who "cannot" help and are constantly "thanking" me for taking care of my Mom. It still annoyes me to hear them say that but at least I have gotten to the point where I can just walk away from it or just smile. Truth is, most of them could not do it nor would their sons/daughters do it for them. My relationship with my Mom has always been different then their's. There are days when I just want to run away but for the most part I am grateful for each and every day I have with my Mom. She inspires me daily and encourages me to help others. Because of her we have helped others, we take phone calls from those who want to care for their PALS at home but are discouraged or from those who are afraid to vent and have questions. Mom has given me a whole different outlook on life. Being a caregiver is not easy, that is why we need each other. Thank you all for being here, you are a constant support system for me. I am not on much lately but when I do pop on I am reminded of what special people we all are.

[Pepper]

Last night I was eating dinner when I heard the bell and hurried into the bedroom. My husband told me he almost died, he passed out choking on his mucus. I took a look at him and quickly got the suction machine to get the phlegm out. I got out some, unable to get more than that. He looked like he had difficulty breathing. I had just given him his nebulizer. I saw the bipap machine and quickly hooked him to it. He calmed down a little. I went to call the hospice. The nurse phoned and asked me if I have given him this and that medication. I told her I had just given him all those medication. She suggested giving him oxygen. I switched him to oxygen and then reaction set in. He started shaking and crying and called his daughter. I added to the phone message, describing what just happened. She did come as soon as she was able to. He started running a temperature, 102.7. I called hospice again. The nurse told me to give him two tylenol and that did work. He cried and shook for over an hour.

[LizT]

Pepper- Im so very sorry this happened to your husband, and to you! It is so hard to deal with all that this disease brings.
Please know that we are here for you to help support you in anyway that we can.

[Pepper]

LizT, the nurse believes my husband has aspiration pneumonia and told me she believes it is the end. I had stayed frozen all night last night and this morning until I heard that. My husband actually got better. Today is the first time he got out of bed to go to his computer in days. Now he is on bactrim for 10 days. He has 4 UTIs the past 6 months. The antibiotic clears it and it recurs again. I am glad he is better. Thanks for your concern.

[abbas child]

Pepper, I certainly hope your husband and you both have a good night tonight. I can't imagine the stress and drain of the last couple of days you've had.

[Pepper]

The nurse told me on Friday she believed my husband has aspiration pneumonia and that it is likely the end. He definitely has UTI and is on bactrim. He actually got better and asked me to take him to flea market. We have not gone in months. He continued being better this morning. At 1 pm he went to sleep. At dinner time I tried to wake him up, it was very hard. I finally woke him up at 7 pm. He told me he loves me 3 times, kissed me on the cheek twice, he never kisses me on the cheek. Then talked about something he saw in the room. I could not understand what he said at all. His speech has gotten bad recently. He told me there is a lot of moisture floating in the room. And to tell the society of people in the room.... I could not hear the rest. It rather spooked me. I saw his catheter was not working and thought good excuse to get the nurse here. I called hospice, the nurse called back and said she would not worry about the catheter not working and to wait till morning. If it is still not working then call them again. This is the second time he sees things in the room I do not see. The last one was some weeks back but then he was delirious with UTI.

[Katie C]

You need to tell the hospice nurse that he is seeing things in the room. Is his fever back?

[Pepper]

Katie, thanks. The nurse is coming to see him today. I will tell her. This morning his mind was clear, he knows me etc yet he went very seriously into telling me, hand holding his blanket that the first individual who comes can use the blanket but we are not giving it away. No, we are not giving it away. It took him 10 mins to tell me that and even then I am not sure I hear him right. He talked so much last night but I could not understand him. One of the things he told me is I am security, security and he needs security. That was nice.

His catheter did not work from 1 pm yesterday. I called the nurse on call who told me if he has no pain and no discomfort to leave it till the morning. This morning, at 5 am, I felt very uncomfortable and counted the hours - 16 hours with not drainage, that does not sound right even with not pain or discomfort. I called again and this time the nurse came to flush it out. Next time I will do it myself, I know how to do it. The regular nurse does not really like me doing it hence I call hospice. Also sometimes it is more than flushing the blockage.

[Katie C]

Pepper... you're doing a good job hon. You are at a point where everything is so hard. Hang in there, and even though it's hard, try to take care of yourself too.

[pepsiman]

It's so very hard Pepper. You are doing a wonderful job. Just hang in there and do the best you can. It's all anyone can ask.

[Pepper]

Thanks for the support. Just to share. This morning, with lack of sleep, I did not feel too well and all nerves inside. I could not concentrate on anything and sitting at the computer, put my head down, crying quietly, "I am breaking. I am breaking." I am usually good at handling it but this morning for a moment I did not know what to do to relieve the feeling. I thought, I will do something like a treat - I will slowly eat a bowl of hot noodle soup. It worked. This afternoon, I had to go for medical appointment. Hospice sent a volunteer to sit with my husband. I decided to treat it as a break. 3 hours later, - it was a long drive, I came back restored. My husband is better also. I started teasing him and playing with him a bit to perk him up. He is on quetiapine, a medication treating dementia. It is helping, from looking closed up and serious because he is not able to speak without great difficulty, his mood is actually lighter. He talked all that time with the volunteer, a marvel in itself. He gets tired easily and often let it be known to health carers he wants to be left alone and rest.

The nurse this morning found him better and told me he has rebound back.

[Katie C]

Glad to hear you got a break and that he's feeling a little more like himself.

[sharona]

Hi Pepper,
Glad to hear that you hubby is feeling some better & that you got to take a break.God Bless & have a Merry Christmas
Sharon

[abbas child]

Pepper, it's wonderful to see your post. I'm glad you got a break and your husband has had a rebound. Merry Christmas!
Ann

[Pepper]

Thanks all for the support. It warms my heart and gives me so much comfort. My husband continues to be better with no sign of that delirium. He is himself today. When he is delirious, I can tell, his mind is half there, he gets very busy fingering the blanket or sheets or remote control, and talk and talk, and I find it hard to understand what he is saying catching a few words here and there. The delirium could be due to UTI. He gets recurring UTI due to the catheter.

[laurel]

Take care of yourself Pepper. I will be thinking about you and your husband over this holiday season. I hope that things stay stable for hubby so that you can have a peaceful holiday season.
Laurel

[Pepper]

Just now I was in the bathroom getting ready to brush my teeth when I heard my PALS coughing. I hurried out and saw him choking on his mucus, his face showing urgency. I quickly elevated the bed, and got him something to cough into, moving behind him to give him light chopping moves with the hand which the nurse taught me. He coughed mucus into the container and the crisis slowly passed. It was scary, coming out from nowhere. One moment he was watching TV, and the next he started coughing. He has been better today.

When he started losing more of his speech, he became very sad and depressed, crying often during the day, aware of his plight. The past few days he is at peace and appear happy again. I am blessed having a PALS who is very easy to care for most of the time. His nights are better also. There was one week only when he was not able to sleep and made noise all night, making it hard for me to sleep. Now he sleeps more at night. The quetiapine appears to work.

Merry Christmas also. We will have a quiet one.

[Katie C]

I just looked it up... Quetiapine is the generic form of Seroquel, which is what Glen took. It really does work well. One thing we found is that the body seems to build up a tolerance, so if he starts showing symptoms again, let the nurse know and they can increase the dosage. Apparently the dose used for dementia is very tiny compared to what is used for other psychoses, so there's a lot of flexibility in the dosing. The other thing Glen's psychiatrist had us do is if there was something potentially stressful happening (such as a family event with lots of people and activity) we would give him an extra dose a little bit before the event.

[Pepper]

Recently I noticed my husband's inability to sleep at night was not the usual. It was like his brain is wired to stay completely awake. The nurse tried two sleeping pills on him and none of them worked. When I described him plucking at the sheet, blanket, fidgety and restless, playing with the remote control of the bed or TV all night, she put him on this. The first time he took it, he tossed and turned for an hour in obvious great discomfort. I almost gave up on it, she suggested trying it a second time but 50 mg instead of 25 mg and it is helping. Thank you for the tip. If I notice it is not working again, I will let the nurse know.