Loneliness
Caregiving can create a strong sense of loneliness, as folks, often friends and family just seem to disappear into thin air. That’s compounded by the fact that sometimes communication with our loved one can be very limited due to the nature of the disease or illness. In other words, there may be no communication for lengthy periods of time.
When I was caring for my wife Annie, due to her low immunity we could go several days without a visitor of any sort. And the fact that she was on high dose narcotics didn’t help matters any as, she slept much of the time.
What made matters even worse, was that Annie, although very ill was lonely too. It’s can be a real oxymoron. People can be a nuisance at times, when they come into your home and all they want to talk about is their problems, especially to a woman that is in her hospital bed dying of cancer. But being desperate, loneliness often wants them there anyway. Company becomes company, and the conversation, no matter what it is, becomes fresh and new, with a new voice. Sometimes the new voice takes the patient or loved ones mind off their own illness, and that’s a good thing.
It seems to me, what it boils down to is communication. I wasn’t very good at communicating to friends and family that we could sure use some company. Instead, I just wondered why not many people stopped by. It’s tough. There were times when people did stop by and Annie had very low immunity, the new rules, as laid down by her oncologist, had changed the rules on the playing field. I wasn’t allowed to let any person, especially children, near her over the fear of her catching a germ which could lead to a very serious, and in-fact fatal infection. So I had to turn them away. So as you can see, loneliness is a big part of caregiveing, and can happen through no fault of anyone, or the fault of everyone and everything. Sometimes, loneliness simply gets lost in translation.
Grief also creates a strong sense of loneliness, and can lead to a lot of solitude. On the other hand we may be surrounded by people, but we’re still lonely over our loss. In essence grief and loneliness go hand in hand. It’s the double edged sword effect.
When one grieves over a loss, there can be a strong sense of isolation, and in that instance the isolation creates the loneliness. And I might add, the loneliness felt from feeling isolated is a real problem and can cause mental health issues.
I saw Dr. Bryant, my psychologist, the evening of 30 December 2015. He said to me, “my biggest concern at the moment is dealing with your loneliness.” He said it can create instability in a person, depression, anxiety and escalate to a whole sundry of other problems, which perpetuates being lonely. Many of the illnesses I went through in 2015, probably used loneliness as a contributing factor.
From his words, loneliness is not to be trifled with, and can make you sick over time. Having said that, a full recovery is possible when and if the loneliness dissipates.
Metaphor
When I was 20 years old I joined the Air Force. After basic training and technical school I was sent to England for 3 years. The first six months in England, even though I worked most days and made many new friends, I felt like I was the loneliest guy on the planet. Over time, I think the cycle broke rather naturally as I accepted my fate. I was going to be there for 3 years whether I liked it or not, so I might as well spend my time having some fun. So I did! Eventually, I felt less lonely with my military buddies than, I had at any point in my life.
The truth
In the metaphor the loneliness was real, but there was always going to be a fix. After all, I had a maximum time limit of 3 years to the loneliness, then I’d be going home, and I could always see the light at the end of the tunnel.
Losing a loved one is the real deal. There is no time limit on anything to do with grief or the loneliness, and at the time not much hope either. And there is no magic wand to wave and make things better.
The dynamics of grief is such that we can literally bury ourselves in our own sorrow, cutting ourselves off from the outside world, and our family and friends. In doing so, we inadvertently create circumstances that will fester, and develop into full blown loneliness, during and after the grief.
Understanding that loneliness and stress are bits and pieces of grief, one needs to take grief very seriously. When mixing the three together, the grief can become very intense over a short period of time, and in the case of elderly couples it can lead to extreme grief which develops into the broken heart syndrome. In a research study over a 9 year period of over 373,189 elderly U.S. couples, by Nicholas A. Christakis of Harvard, and Felix Elwert of the University of Wisconsin, it was noted that in 18 percent of surviving male spouses and 13 percent of surviving female spouses died not long after their other half, from sudden death due to all causes. So if you lose and elderly parent, and the other parent is alive, pay attention to them. Help them through their loss if you can.
Personally, I despise being lonely. But it’s my burden to carry and I carry it every day, where ever I go. My life has turned into a 4 step program. First there was Caregiving, then the grief and stress, now loneliness. That’s a lot for me or anyone else to deal with. It’s like being caught in a shadow world where one minute you can see your shadow and the next minute you can’t. Meaning, we walk out of the house with good intentions thinking we have it all figured out, then soon realize, we don’t. It’s just another illusion of happiness. It’s really tough to have anything other than spurts of happiness when your lonely.
Another point I should make is that loneliness is kind of like grief, in that it allows us to make poor decisions. Perhaps, we might do things we wouldn’t normally do for a fleeting moment of self gratification. For example, buying a new expensive feel good toy that elevates our spirits for the moment, but when we get home we think, how silly, I don’t want, or will never use that toy. And the beat goes on.
How do we get out of loneliness
I say we, because I’m stuck in the loneliest period of my life as I write this article. Yes, I could go out and meet someone, but I’m smarter than that. Loneliness is very deceptive. I could one day get over the loneliness, and wake up one morning with someone that I don’t want to be with, or perhaps, I don’t get over the loneliness quick enough, and she decides she’s made a bad decision and leaves me. Either way, someone often gets hurt.
What I think I’m going to do is, get more involved with volunteer work, which will get me out into the community and help me start meeting new people, and doing some things that I might not necessarily want to do, but in order to break the cycle of loneliness, I need to do. I really have no other answers, or options that I know of. I’ve been told, yoga and meditation are helpful, but I’m not that guy. I know this, being around family and grandkids provides some comfort from the storm, but are not the answer. The answer lies from deep within me, and I just have to dive in and pull it out.
This has to be my year, and I’m going to get better and break the cycle of loneliness, no matter what it takes. I know, I’ll stumble, maybe fall a few times, but each time I do I’ll get right back up, dust myself off and try again.
When I was in the 7th grade, and at a school dance, I was so afraid to ask a girl to dance with me, in case she said no. But I did it, and after I got turned down a couple times, I became more determined than ever to get a dance. Then fate intervened, and this cute little popular girl named Bonnie, walked up to me and asked me if I’d dance with her. I couldn’t believe my luck.
One thing I know for sure. Sitting around in this house day after day is not going to break the cycle of loneliness, or change my luck, but it could break me if I don’t get that dance.
And sometimes, despite all we do to break the cycle of loneliness, we still need a little help. So, as I sort of did at the dance, put yourself out there and just maybe fate will do the rest. It’s not going to be easy, but you can do it, and so can I.
My fear is, if we fail, the consequences could be dire.
I wish you the best!
bob@thecaregiverspace.org
Me neither. It’s hard to ask for help. Everyone is so busy too.
True, just a call once a month can make a difference to the one you are caring for.
The caregiver experiences great grief and loneliness-they are possibly for the first time watching a love one pass – for me it was part of the journey (I did not read the article) that I was on w my loved ones – death came early in my life – grandparents but at 28 I lost my husband in a tragic accident – I had 2 children 3 and 5. Just before his accident my Aunt shot and killed herself. I was my mother’s caregiver first – I learned TONS! IF I could only go back! I had it together w my dad – knew what I wanted (and what he wanted) and I took care of business. Yes I was lonely yes I my heart was shattering yes my legs were soooooo weak I could not stand – the pain unreal – feel alone? Your damn right you feel alone! I’m an only child – I had no body else. Now I feel like an orphan-however, being a caregiver is the most important loving caring heartbreaking thing anyone can do for someone – I still remember I still feel the brokenness-
Thank you for sharing this post and your struggle. Hopefully, we will all be more sensitive, supportive, and available.
I did not know this was available to ANY one outside of the Caregivers Group! Yikes
I have been more than open to make it known with no different result
I’m here for you baby!
Yes, sweetie, i know
My go bag is always packed and ready!
Sometimes it’s not the communication of wanting company. Sometimes it’s the fact that no matter how often you ask for company, they always have excuses as to why they don’t want to come.
My fiancee had a massive stroke in September, 2015 and I have been taking care of him ever since. His family will not even help because they say, “they can’t handle him”. I have even been told that if I was not around, he would probably be in Long Term Care. I have asked certain family members to come and stay for a couple of days. Not to help me but just to give my brain a vacation from being depressed and lonely and they always give excuses as to why they can’t come. But if someone else in the family asks them to come and visit, they are all for it.
How do you cope with wanting people around but no one seems to want to come around and, as a result, it makes you more depressed and more lonely and not good enough for other peoples time?
Caregiving has been the hardest job that I’ve ever had, hands down. I’m spent emotionally, physically, financially and even spiritually. I simply stopped asking for help or even talking about it. My two “best friends” tell me to stop the ‘Victim’ talk. They have no idea. Their parents had resources (a lot of money buys a lot of solutions) that mine do not.
I have been there , this is very true
This is so true.. our son stopped by last night unexpected for dinner. It totally made our day, week, year. He was not here an hour, but those few minutes helped so much.
It shouldn’t be hard. They already know what your going through.
I not only take care of my mom 24/7 ,but I have a son with asperges syndrome and I’m exhausted, feel horrible I can’t get out with him because we have no one to sit with mom….to release the stress and sadness I go to the corner of our garage and cry….
I feel it’s a combination of people not wanting to hear about it, not wanting to see that person as they are now vs. how they knew them, and people being desensitized due to social media. Checking on us through text and Facebook is not the same as a visit. It’s very lonely at times. I just try and take it day by day. Watch movies, play music, read books…I am so thankful for my two best friends that check in on me from time to time, but even that is becoming more infrequent.
Yes! It’s very lonely! Could use company!
Very True .
Perfect timing for this article. It’s the weekend, and while I hate still having to work, mom’s aide leaves when I come home during the week and then at night and on weekends it’s just me. I dread the weekends. Whenever anyone says to me, “Have a good weekend!” I just smile, say “You as well!” and walk away feeling like I want to cry because while most people I know have plans on going out and doing things with friends or family, my mom and I are home alone all weekend long.
When I started this journey, people wanted to visit and help. Out of respect to my mom, who is way too proud and way too independent, I turned them down. Now some years later, only a few call or offer. It’s a vicious cycle that I accidentally helped perpetuate.
Yes, i know exactly what you mean
Pride can hurt
And your journey can be not only exhausting but lonely.
We have become invisible. No fun anymore so most just do not care to come.
Stay strong!! Never give up!
Sometimes people just don’t want to hear you either
I could not have said it better. ( thanks.).
A long bumpy road.
I am all consumed and rarely have time for me and I always think “someday”…:(
So true– it is not the “work” of care giving that is hard– it is the emotional toll of grief and loneliness along with being 100% responsible for the care of another persons life.
So true
Perfectly said
It is a very lonely job. Everyone Is busy with their lives and taking turns with caregiving. When it’s your turn everyone is taking a break. Company is always welcome.
Totally agree it seem like when you need help no one is willing to help even though they said if you need anything call but they never can
The one thing I did after caring for my parents for a few years 24/7 then losing them 2 months apart was to go out and volunteer. The gentleman who wrote the article hit the nail on the head, get out and volunteer. It brings back so many good feelings from your inner being to your outer, helping people. After volunteering for a while you rebuild your confidence, your ability to smile and open up allowing some of your deep fears to disperse out of the dark places so you can start to live again! It’s never easy but if you try you’ll be amazed at what can open up for you.
My heart goes out to all caregivers! Also remember there are resources in the community, find them and get help for yourself.
You don’t think it will happen to you until it happens. I feel invisible in many ways and used to be involved with my community . Now it is once in a while . My Mama comes first and I am doing whateve it takes for as long as I can being an only child . Many meltdowns .
Your Mama is blessed to have you, Kathy. You are a wonderful daughter!
Thank you friend ! Hope you and Robin are doing well . Your boy is beautiful . Again thank you . Means a lot .
It is very lonely and draining.
I really appreciate this article thank you.
For the last seven years, my husband and I have cared for his grandparents. Loneliness is not our problem. It’s the frustrating feeling that we put our lives on hold to take care of them. They didn’t want to move in with us in AZ so we moved in with them in MN. We moved in with them a few months after we got married. So we never really started our lives together. We have a great support group between the medical team and our friends that we have known since high school that communicate with us one way or another everyday. We lost grandma two years ago and we still have grandpa. He gets harder to care for each day too with his dementia. My husband and I sometimes feel guilty that it seems like we’re waiting for grandpa to pass on so we can move on with our lives. Dementia has taken grandpa’s quality of life and we can see the frustration in him about that. That makes it harder for us to care for him. It seems all three of us are waiting for the day we are all free.
Hits the nail on the head x
event w help is intolerable and a LONG lonely journey for the closest relative
The best we can do is be truthful. They’re are more out there thinking I can do this yet in reality it’s killing the caregiver faster than the loved one they’re caring for.
Always be truthful!
Understand caregivers are human.
What one caregiver can do verses another should never be put against the other.
I had help and decided it was time for me to throw the towel in. Yet they’re others out there that can go on for a few more years. I knew my limits.
Again be truthful.
Blessings to all caregivers.
I agree with the comments care giving is a hard and lonely place to be if you don’t have help
Very interesting
It sure is
It is a treadmill of despair. Inside you are screaming for help to get released from the whirlwind of 24/7 meeting the needs of another adult in every way, physically, spiritually. Your mind is an automatum of medicines, times, dressings, bathing. The everyday attending to the bill paying, the appointment keeping, the care equipment, and other professionals popping in and out for 15 minutes. Without family or friends you feel defeated at the start & end of day. Sleep will not come though you are so very tired. When others are around they don’t find you, speak to you as you for they are just talking and doing everything for the cared for. Doctors, nurses, physio’s. You feel you will not survive, when you have a moment to feel. All in all I cared for more than one person back to back and sometimes whilst working for finances were another exhausting feature of the cycle of the carer. Yet now it is me. I am not lonely but I am alone. I am lost and don’t know how to care for me, it has been so long since I knew there was a me! It has been 11 years since the last time and still I am finding the wherewithal to find myself worthy of recognition, of knowing I exist and needing to find the strength to care for me, for who am I? I am not lonely but I need to be cared for but cannot do it for I would then have to see me!
I can relate to what you are describing.
It’s like becoming a ghost. You are on the treadmill of being a carer and it’s so tiring that even sleep (if you are so lucky) doesn’t touch the places you need it to.
The responsibility and routine of it all can be almost unbearable.
I have recently started to reconnect with myself & only just started a bit of self care (it’s a long recovery road).
I found useful :
1. Trying to find out what soothes me – when you focus your time on others, you lose your sense of self – (things like walking, sitting in silence for 30 minutes) and doing them when I need to.
2. I took the plunge and signed up to seeing a counsellor for support (I’ve only just started)
3. Not put pressure on myself to feel the need to ‘move on’ (caring for someone is 24/7 and takes over every part of your life and recovery time is needed)
4. See if there are any online support groups you could join (Facebook has a few normally).
I wish there was a magic solution for us both – but I’ve not found one yet.
I’m in the process of trying to reconnect myself back into the world
I know it’s hard Cheryl. I took care of my Mom. But the reward-oh the reward. You will ALWAYS know what you did. And once she’s gone to the angels, you’d do it again just to have her back for a minute.I promise. Take care of you.
One day at a time, sweet Jesus. ✝
Oh yes, it can be awfully lonely.
I can’t do it anymore, I’m physically and mentally drained, my two neurotypical children are suffering and I’m screaming for help but due to cuts our respite has been cut, thankfully my son is ready to leave and wants to start his own life.
Very lonely
My prayers are with y’all. I know the loneliness & isolation. Cared for my Dad for 8yrs. Last 3 was 24/7. He passed Nov.28. He’s free & I am too. Im still alone a lot but slowly learning to rebuild my life. Mostly I find I don’t know what to do with myself. One day at a time.
Yes I know
I am a Caregiver as silly as it sounds I ♥ my job and suffer from no side effects. I just handle things pretty well.
Paid?
There’s a difference between someone who chooses this life and someone who is forced into it.
Big time Julie Pauley
You become invisible, long journey that few realize gets harder rather than easier. It is a very lonely and hard life to be 24/7 without any help.
10 years and no help
14 yrs no help
I understand. God bless you for your hard work, I have been there for 17, first my Grandmother and just helping neighbors, now my husband and my Dad.
24 years and counting. 2 choices and 1 isnt an option. Even though its a lonely journey, I simply have to remind myself that if my son continues to fight, then I cannot give up. I have to keep going.
Rhonda, if I could of had 24 years care giving for my wife Annie, after the diagnoses, I would still be trucking along with her, thankful and blessed for getting the opportunity to love her, one more time.
It’s crazy.
With all the people in and out of our home while taking care of my Mother you think it wouldn’t be lonely.
You become isolated.
Even though you try not to.
It’s a horrible feeling.
I loved everyone that came in and helped yet I couldn’t wait for it to end.
Just not lonely, the noise. Constant noise.
I felt like I was dealing with PTSD.
Mom is in a nursing home now and noise still bothers me. Note I am alone in the home but not lonely.
EXTREMELY, EXTREMELY LONELY
Thx so much for your inspiration and sharing. It gets pretty isolating just being misunderstood by so many that just don’t “get it”. It is comforting just to have those rare people who truly sympathize and empathize. Keep the hope! Like we say in Muscular Dystrophy circles…Hope – It’s really all we’ve got.
Thank you Kate for all that you are doing for your family. I know it’s tough. Best, Bob
Yes, this is true…all of it from the loneliness of before to the loneliness of after for the caregiver of all kinds (I’m of the “sandwich” generation taking care of my elderly father after the death of my mother and of my newly adult daughter). We who remain, who shore up the caregiver (the spouse, the survivor, the one who remains), who recognize that we are the support system for those who sometimes don’t ask or don’t want to ask or forget to ask, need to remember this part of being a caregiver as well: loneliness is real.
This line resonates: ” It’s really tough to have anything other than spurts of happiness when your lonely.” But, by remembering that the “spurts” can turn into a trickle or a flood or the end of loneliness, we can take that step out.
Good luck to all of you.
This commentary discussion is so heartwarming, sad, and important. Love you all, God bless.
Thank you Diane. Best, Bob
Hi Sharon, yes, much of what we feel can be self-imposed. However, initially or for a long time, we don’t know that. We only relate to what we feel. And even if an emotion or situation is self imposed, how do we suddenly become rational and change it. It’s simply not that easy. But it’s a start. Focus to a point in life where you’d like to be. Which in my case was, I just want to feel somewhat normal again. Understanding, that the only way to wellness is figuring out what’s wrong and fixing it by, working on it, one day at a time. I think loneliness is the last emotional step in the process. Be well Sharon.
Oh Lord! You got it spot on! My caregiving years (8) were the loneliest days of my life. Yes, grief hurt too. Two years after my caregiving ended, I am still lonely and , with professional help, finally realizing how much of it is self imposed. Thank you and bless you for your heartfelt posts!
God bless you, and everyone going through this. We didn’t have hospice till the last few days, and by then dad was comatose, he went to the hospital and died still comatose. Before that, before hospice came in – I always wondered thought, ‘ the poor guy is dying. Can we not come and sit next to him?’ But NO! Germs, germs would hasten poor dad’s death……….so, there ya go. God Bless.
Lassie you didn’t upset anyone we need these conversations. My condolences to you on your loss. It’s unfortunate that your mom barred visitors, unless it was your dad’s decision. My wife was only blocked from having visitors by me, after I explained everything in detail to her and she felt it was best if she wasn’t around germ carriers. I followed her wishes. But the last few months of her life All barriers were taken down. It became obvious she was nearing the end and she and I both knew it. She wanted the comfort of some family and friends. Oddly enough, she didn’t die of an infection, she died of low platelets. I was like your mom in the beginning of Annie’s journey. Doctors insisted I keep her away from germs and I did. Everyday in our home I was always disinfecting anything she might come in contact with. I was relentless. Back to your mom, I think she should have allowed some visitation under the circumstances. But as I read your current post I was just like her off and on depending on Annie’s immunity for a couple years. Her last six months, it became pointless.
Thanks for posting. I do understand.
Lassies words: I’m going to say something so UTTERLY SHOCKING – please go ahead and jump up and own on me with both feet, in pointy heels – but you have a loved one, one foot on a banana peel and the other in the grave – would it be so VERY bad if they got something from their kids, or grandchildren, that hastened their death? I know my father had cancer, and was sitting alone in his house with my mother, nurses, etc. – no one was allowed to visit in case he caught something. He was dying. He had a year or less to live. His life and my mother’s life were just about UNBEARABLE. till he finally went into the hospital and died……. why stretch it out, banning visitors?
Hi Melissa: I think you are correct in your assumption of what Lassie was trying to relate to me. However, as a moderator I have to look at the big picture. It does appear that Lassie was talking about germs, but what if she wasn’t. Lassie uses the words UTTERLY SHOCKING–there is nothing shocking about a cancer patient dying of pneumonia from germs. That’s quite normal. So I have to make sure I’m not giving a green light to do something dreadful. Obviously, I believe in and know you do to–The loved ones wishes. If their wish is to see the grand kids, and they are told the risks and still want the visit, then the visit should happen regardless of the germs or the consequences.
That was a good catch for you, and expanded the conversation. Thank you.
I had to protect Annie, your momma, out of respect for her wishes. She wanted to live as long as she could. So knowing what I knew about her inability to be around germs with her low immunity, I did what I had to do to keep her alive as long as I could.
However, if I ever get sick like that I want the grand kids around as much as possible. They make me laugh and happy. I know the consequences, and I also know dying of pneumonia is a great pain free way to go. You go to sleep, and quite frankly don’t even know you’re dead, because your dead. (Smile) You’ll be the Captain of the Ship. Love you tons kiddo!
Oh, I didn’t mean to upset anyone inordinately, was not advocating ‘murder’ or ‘euthanasia’ or suggesting infecting extremely ill people, deliberately, with illnesses like colds, was a good idea. They are already suffering enough. All I know is in the months when my father was dying, confined to his house with my mother, great precautions were taken to keep any germs away. No one was allowed to visit! (A few of us toward the end were allowed in but had to stand across the room – no touching, no hugging! just looking.) No grandchildren could visit because they harbored cold germs (you know how childhood illnesses go, ear infections, colds, fevers, rashes, stomach troubles). It was even sadder and more tragic than it had to be because of the fear of germs. I suppose if poor dad caught a cold his bad lungs would have been even more compromised and he might have died of pneumonia months earlier than he had to. But I know every day, his life diminished by cancer, just fading away, he openly prayed for death and pleaded that he be allowed visitors to pass the weary time. No visitors was my mother’s decree, and no visitors were allowed. So he lived a few more months – to what end? His suffering was stretched out….I know we have or will all go through the death of a parent, it was the first time for me and my siblings. It was just hideous.
Hey Dad, Surprise surprise!!! First of all…WOW! Time after time your words just blow me away. I am so thankful I have you to guide me thru this whole process. I love you! Second tho…dad, I think you misunderstood Lassie?? Although your answer was fantastic and made a great deal of sense, I think she is asking more about the germs causing problems then euthanasia. I think she’s saying her parents spent the last part of their life’s alone out of fear of contamination causing an early death. She is wondering why not choose quality over quantity…and maybe I’m wrong. I just want you to reread her post and see if I might be right. I believe you will have ANOTHER fantastic answer for Lassie! Dad…I love you and thank God for you daily! I apologize for being so sensitive and grouchy today. That topic is just so hard for me. I cherish my time spent with you and I will do better at not getting so defensive!! ️Xoxo can’t wait to see you tomorrow! Goodnight, good luck & God Bless to you all! Thanks for caring ❤️
Thank you Joy for the kind words. Yes, in time things will fall into sync, but until then welcome to the roller coaster. It can be a bumpy ride at times, but its a time to make good memories as well. Ones that you will never forget. Remember, good always conquers evil. Stay safe and be strong.
Hey, Bob, thanks for your understanding and supportive comments. My husband is a great help to me. He gets up first in the morning and takes the monitor with him, so I can get some sleep with out listening with one ear. We have aids that come in to help, but until my sister is comfortable with them, I am always on stand-by. And then, there’s been such a turnover that it seems I’m always training someone new. One of these days it will all fall into synch. Hubby & I recently took a trip out of state to see our daughter and her family, which helped a lot. My sister was in respite care for 16 days and it did us all a world of good.
I’m sorry about your wife. It sounds like you did a great job of honoring her wishes.
Peace, Love & JOY to the world.
My deepest sympathy to you in your loss of Annie. I understand your loss as I lost my beloved husband 3 1/2 years ago due to a sudden heart attack-I became a widow 3 hours after the first chest pain started. I know my survival is in continuing to be amomg family and friends and getting out of my home to enforce there is life after loss. I try to wake up in the morning and count my blessings which some days is a struggle even now. Faith has played a big role also. I am a retired Hospice nurse and your comments regarding the program bothered me greatly. Hospice does not hasten death rather we travel the journey with the client and caregiver-helping manage the symptoms of pain, nausea, etc. We support the caregiver by assisting with bathing, personal cares and emotional support-knowing the huge role of the caregiver as we once had a caregiver die suddenly before the client. We support the client and family visiting often as need arises and are on call 24/7 for any questions and visits to support all as needed so they are not alone on this journey. We have volunteers who are matched with a family to visit also so it isn’t just medical personnel who visit. We are there during the last hours to assist and provide support for all. We are at the funeral to support the family. We are in contact for at least a year following the death supporting with phone calls, visits, and letters that detail grief and letting them know what they may be feeling is normal and we offer support as needed. We honor their loved one once a year for all Hospice clients lost over the past year with a special memorial program. Hospice is a wonderful program and is the most beneficial when initiated months prior to the impending death knowing no longer will curative treatment be sought, rather now palliative care is started. Palliative means treating the symptoms to make the time left the most comfortable and rewarding as possible-in other words, we teach them to live life to the fullest with the time left. I hope you understand the Hospice program better now with the insight given on the purpose of Hospice Again, I’m sorry for your loss and may you continue to heal and find peace. Ruth
Hi Lassie, I’m a guy, so no high heels. Your safe. Here’s the problem. If you or the grand kids were to do anything to hasten a patients death, that is unlawful in every state and can get one, some jail time. You can’t do that. Now, in some more liberal states, they have the pill, which under the circumstances you described I’m sure the person would be allowed to have if he/she desired, ending their own life. But we as siblings can’t make that decision for them. Kansas, where I live, and in my case, the doctor told me my wife Annie needed hospice now slamming her little fist on the table. And Annie was very ill and believe me, she certainly qualified for hospice. So as her POA, with the right to make decisions for her when she couldn’t, I could have condemned her to death that day, but I didn’t. I took her home from the hospital 2 days later, temperatures in there teens, and after 3 months of very long days and some sleepless nights I nursed her back to health. She was dying in the hospital from malnutrition, and apparently no one could see it but me. What I did, allowed us to have the best summer of our life, our last summer together. I made that point because, too many people are so quick to fall in line with hospice, often times resulting in premature death. Annie wanted to live as long as she could, and always said when it was time to go home, she’d tell me. She started bleeding internally, which we knew was coming, and when in started filling her lungs, she said, “Lets get started.” My daughter Melissa and I did the comfort care/hospice by ourselves, with the consultation from her doctor. Twenty-six hours later it was over.
But, I get your point. I’ve given my instructions to my daughter, having been there and seeing the misery that comes with a terminal illness that can ever only end one way, death. It’s so difficult on the family and loved ones too. So my instructions to her are: following the laws of Kansas, if I’m terminally ill I do not want to go through what Annie went through, so at the earliest possible time, consulting with doctors, and hospice if she desires, go ahead and pull the plug on me. I’m okay with that. Annie wanted to live as long as she could, and I wanted that for her too, so we pushed the envelop as far as we could. Had she of said, Bobby, please let me go, reluctantly I would have honored her wish.
Hopefully, Annie’s wishes to live will be a good explanation as to why I kept as many germs away from her as I could. Most cancer patients die from infections, due to such low immunity.
Lassie, if you put the wishes of the patient first, you have to honor them. But, if they want out of the miserable suffering and want to die, get in touch with the doctor and hospice and see if you can help him out. That’s the humane way to handle those situations. If this country starts playing God or think we know whats best when making life and death decisions, we better have the legal authority to do so. Even in Oregon, the patient has to say, “I want the death pill.” And that’s over simplifying it.
In Annie’s case, twice I chose life over death, and there is nothing illegal about that. I don’t regret the beautiful memories we made from the extra time she got either. Yes, the trauma was there too, but the trauma has now left me, and the good memories remain.
I hoped that helped answer your questions. You’re simply saying what millions of people think, but are afraid to say. I encourage people to talk to their loved ones and see what they want. And then find out what legally can be done.
I wish you the best Lassie, Bob
I’m going to say something so UTTERLY SHOCKING – please go ahead and jump up and own on me with both feet, in pointy heels – but you have a loved one, one foot on a banana peel and the other in the grave – would it be so VERY bad if they got something from their kids, or grandchildren, that hastened their death? I know my father had cancer, and was sitting alone in his house with my mother, nurses, etc. – no one was allowed to visit in case he caught something. He was dying. He had a year or less to live. His life and my mother’s life were just about UNBEARABLE. till he finally went into the hospital and died…….why stretch it out, banning visitors?
Thank you Donna. I’m working on that next chapter, but not sure where it will lead me yet. It’s becoming an adventure of sorts. I lost Annie just over 5 years ago. The road had been long, the journey tough, but here I am writing to you. I think that means I’m still alive. Hope so. Take care, and thank you Donna for the encouragement.
Barb, your insight is amazing. I’ve never heard of MeetUps, but it sounds like a lovely place to break the streak of loneliness. And whatever worked for you, I’m sure works for others. Thank you for the useful, thoughtful, information. I must admit, I’ve never heard of MeetUps. Although I certainly understand the concept. Best, Bob
Joy, you have your hands full. Both emotionally and physically. And a bunch of questions without any answers. It touches me deeply when I hear of a loved one that has a child that doesn’t acknowledge her with caring visits once in awhile. But, that is very common place in the world of care giving. Out of sight out of mind. Grief is not a good thing for you to drag around, but when you don’t have time to grieve it’s gonna camp out with you every minute of every day, if you don’t find a way to deal with it. With your husband there, can he help while you take a break. Even if it’s short walks that gets you away from care giving for a bit, and allows you to clear your head and think of those that you grieve for. I know, that’s not an easy task, I could not leave Annie’s side for more that 20 minutes, then I made my way back to her. There are no easy answers. Just do the best you can, and hope for the best. If you’re of faith, pray. I will tell you this from experience. Care giving and grieving at the same time can make you physically ill. And then what! You can’t take care of anyone. Try to take a short break when you can. You’re a strong person Joy, and doing an honorable thing. But don’t let it break you. Best, Bob
Absolutely, thank you Pat. Best, Bob
Great read … All so true .. So sorry for your loss and I wish you the best as you go they the next chapter of your life !
donna
MeetUps saved me after my husband passed. There are so many different groups, I was able to pick many that interested me. Let go of the ones that didn’t fit. Most people went to the MeetUps by themselves, so I did not feel awkward. I made 3 good friends, and opened my horizons. No one is going to knock on my door and ask me to be their friend. Old friends sometimes stay away for fear of their own mortality. The missing of a spouse is so sad and lonely, and your old friends see you with a part of you missing. The new friends are more open to the you, you re becoming.
This article really touched a couple of nerves for me. I am grieving, I’m a caregver and I’m lonely at times – other times I relish the seclusion and detest interruptons. My sister had a stroke last year and I am her caregiver, with my husband’s help. Her daughter has very little to no contact and only one of my sisters local “friends” is in contact with her anymore. I know my sister misses her friends and her daughter. I also took care of our mom, wo passed away in July, and I have had no time to grieve her. I am also grieving the sister I had before the stroke took her ability to walk or speak. I am somewhat new to the area, and since I have been taking care of my mom & sister since I moved here, I haven’t had time to form new friendships. The lonliness and grief are an endless, vicious circle.
Just…yes. This is what it’s like. I wish you the best too!