Been reading all the stories and comments. This is a very helpful site. Am primary caregiver for my mom who has advanced COPD. This is a progressive disease and the trials began nearly 7 years ago. The past 4 months have brought significant changes, and now have taken family medical leave from my job to provide total care. She spends a great deal of her time in a morphine induced sleep, as panic attacks are a 2 or 3 time a day occurance now. No one seems to understand, these are very real and something she can not control. Her blood oxygen levels go to dangerous lows, her heart rate soars, and the blood pressure jumps. Such a vicious circle, and there seems to be no end of her suffering in site.
This is the 3rd time I have been very involved in caregiving for a loved one. Thought with ‘my experience’ I could remain focused on those feelings of love and being thankful I can provide some comfort for my mom. Guess I just was not prepared for the feelings of total isolation, helplessness, and loneliness which have been camping out here as well. Thanks for this site, and for listening.
Diane C (Caregiver)
Dear Diane, I’m so sorry for the loss of your dear mom but hoping you can take comfort knowing she is now at peace. You will always be a wonderful daughter to her. I hope you can take this beautiful time of year to heal and regain your strength from the stress you have been under experiencing her suffering for so long. Please know that we are here for you anytime.
Autumn Blessings, Karen
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Thank you Karen. It is a mixed blessing. One of peace for her and one of loss for those she left behind. It is such an adjustment! Amazing how deafening quiet can be! Thank you again!
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To all of you here at Don’t Lose Heart, I wish to send my heart felt appreciation for the kind words encouragement. My Mom passed last Saturday, so her pain and suffering has ended. Thank you again for everything!
Diane
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Hello Diane,
I’m so sorry for your loss, and you have my deepest sympathy. I know it meant a great deal to all of us here at DLH to share in this difficult time for you and your mom. I’m sure it is a relief to know longer see Mom suffering and to know she’s at peace. Please keep in touch w/us, if you feel like sharing any grief you may be feeling. We’ll be here to lift your spirits 24/7
I’ll be praying for you and your family…
Much love,
Ann
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thank you Ann for your kind words and prayers! Am starting to adjust. Just taking it one day at a time.
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Diane, I don’t know of any words to take away your grief, you did the best you could do, and she is now at peace.
Do you feel a bit of relief, knowing she is not suffering anymore? I know I did and started to feel guilty over it, but we are should feel that way, when our loved one is no longer suffering and in pain. My thoughts and prayers are with you at this time. Please come back and let us know how you are coming along.
With sympathy,
~Char
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Diane, I just wanted to add my sympathies as well. I’m sorry for your loss but I’m happy for your mom (that she no longer is suffering). You’ve moved into another arena now. My mom passed last June. Mostly I felt relief that her suffering had ended. But, I do find myself wrestling with sudden onslaughts of grief at the oddest times. I’ll have a good cry, tell her how much I miss her and move on. Most of all Diane, be good to yourself. Sending you a virtual hug.
Susan D.
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Hi Susan,
Thanks for the hug! Virtual is still a good feeling. Boy, can I relate with the onslaught of grief at strange times! It is amazing what little incidential things trigger the emotions. Just taking it one day at a time, and trying to adjust to the changes. Thank you again for your good wishes and thoughts!
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Hi Char
Guess I am starting to feel some relief for Mom, but find myself feeling kind of lost. Had a dear friend tell me how my world would now open up and I could get back to living…know they meant their comments in a positive light, but found myself almost angry! Kind of feeling like how dare you! Guess it is still part of the grieving process. Tough to lose one’s best friend, yet I know in my heart she is better and will always live in my heart.
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Dear Dianne,
I am sorry for your loss. May you be comforted knowing of the care you have been able to give to your mom. I’m sure you are relieved for her that she is no longer suffering from the horrible agonies of her disease. My thoughts and prayers are with you and your family in your grieving.
with much caring,
Betsy
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Thank you Betsy. Appreciate your kind words and prayers!
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Dear Diane – I am so sorry that you now have to go through the next stage of the life cycle, adjusting to life without your mom. I can only imagine how lonely a time it is. Even though it may sound a little crass, I am thankful your mom doesn’t have to struggle for every breath anymore. I believe she is at peace. I hope you believe this as well. Take comfort in knowing you did all you could and that the love you shared will always be alive within you. Bless you Diane.
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Hi Joan,
Yes, I am finding it difficult to adjust to life without my Mom. Yet, as you say and I agree she is at peace and no longer encumbered by the limitations of her body. Not a doubt, she will always be with me. Thank you for your kindness and thoughts!
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Hi Diane;
Was thinking about your Mom’s panic attacks and her medications. Is the morphine also prescribed for pain or to lessen her panic? I have observed palliative care/hospice physicians reduce the morphine, if it is not being used primarily for pain. Then add Valium injections (IM), which instantly reduce the amount of anxiety and panic. Valium also works as a muscle-relaxant, which will be effective during an attack. I do not know the laws in your state, but I have advocated for family members to be taught how to inject the valium, so they can administer it immediately on the first sign of an attack. The injections goes into the muscle (IM) but the needle is not too long or intimidating. If quality of life is an issue and you and your Mom want her to be ‘present’ and interact with family, it my be an option.
Good luck!
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Hi Lynn & Diane,
I had wondered the same thing about using a benzodiazepine (anti-anxiety agent) when Mom gets panicky. I have a feeling that when she has great difficulty breathing, a vicious cycle begins, and her level of panic increases. In addition to Valium, two other meds in that family are very effective in treating panic attacks: Klonopin & Xanax. I’d talk to your doctor about this possibility, Diane. Thanks for recommending a med like Valium, Lynn!!
~Ann
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Thanks Ann! I believe the Atavan is of the same family (benzodiazepine) Am having difficulty keeping all of these straight in my mind! We did talk to the doctor today and she is trying something for night time to help ease into mornings. Thank you for your thoughts!
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Hi Diane-I’m a former psych nurse, so I know that lorazepam (Ativan) is in the benzodiazepine family. Scroll down in the link below, and you will see that this med IS indicated for panic attacks and insomnia. I know that panic attacks can be very unsettling to both experience and witness. However, it’s great to hear that your mom is tolerating low doses of Ativan!! I’ll be keeping her in my prayers
http://www.medicinenet.com/lorazepam/article.htm
Take good care, Diane-
Ann
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Hi Lynn and thank you for your information. We were using the morphine primarily for anxiety. Lately we have gone to Atavan. Mom is small, so we are talking only one or two drops of either. Valium, while an excellent drug, is not one Mom tolerates well at all. Thank you tho, for your thoughts! Appreciate it more than you know.
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Hi Diane,
My Dad was given Ativan while in the last stages of prostate cancer, right before he went into Hospice. It seemed to work, although I am sure he fought as hard as he could, not to surrender to it. He was a very private quiet man, who never let on to us he was sick, until the very end. I admire your daily courage in a passage, none of us wants to take. Be well Diane, and DLH.
~Char
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Thank you Char.
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Hi Diane. (I’m a Diane, too, but have been “DeeDee” since my Norwegian-accented grandfather gave up on trying to get me to say my name as a toddler!) You’ve found the right place, and the right people, right here. I’m a former caregiver to both parents who passed in ’07. This is where I come when I feel the need to feed my soul. Even though the job of caregiving is over for me, for now, the experience taught me more valuable life lessons than any I’ve learned in my 47 years on this earth. I hope the stories shared here will help you, sustain you, enlighten you, and help to diminish any loneliness that may creep in upon you, too. I’m sorry you’re going through this. Having time to prepare for a loved one’s death, or past experience such as you’ve had in caregiving, is an illusion to the acceptance and reality of it all. Keep faith and love in your heart… you’re not alone. You’re in my thoughts and prayers. Peace and love, DeeDee
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Thank you Dee Dee! Appreciate your kind words as well as your prayers!
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Diane,
You have found the right place for support and encouragement at DLH! Everyone here is so wonderful!
I can relate to what your going through. My father suffered from COPD and CHF. It’s so hard watching them struggle for every breath. I hope that you find some help with all that caregiving entails. Good luck with everything and God bless.
Cindy
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Thank you Cindy!
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Hi Diane, so glad to hear that Hospice help is on the way. Know that in addition to medical care for your mom they can also provide you with volunteers to help relieve you, spiritual guidance, supplies for your mom’s care and a social worker who will work with you one on one. There will be many Hospice org’s in your area both privately owned and there may also be some not-for-profits as well. Feel free to call all of them up and ask them as many questions as you like on how they can service you and your mom the best as different ones will have different resources. For example, some may have more limited staff available. Some may provide more medical supplies than others. Make a list of things you need to take care of your mom (toothbrushes, incontinence, disposable gloves, etc.) and ask what they do and don’t provide. They should cover any prescriptions that are related to her illness. You are also entitled to 5 days of paid respite every 60 day period after your initial one-time 90 day period, but it would have to be in a nursing home that is Medicare approved and often that Hospice you are with needs to be contracted with them. They will give you more of the particulars on this, but do ask them all about these things. I wish I would have known half of this when my mom had Hospice in Florida and we had caregivers we were paying round the clock. If you are not satisfied with a certain Hospice while you are with them, you can change to another effective that day, but I believe only once a month can you change them, so ask how that works. Generally, they are a group of caring and committed people, so you probably will be very happy with the support you so desperately need right now. You will instantly feel like you are not so alone anymore in all matters concerning your mom’s health and your well being as well. I myself was at my wits end with what to do with my mom so our family could go on vacation this summer and even just whenever I needed a weekend off when we wanted to go out of town for a short trip, as I was running into constant dead ends with trying to find the right facility for her on my own. Then I signed on with Hospice and my social worker has found us a respite nursing home she is comfortable at and I am actaully e-mailing you while we are currently vacationing & visiting my in-laws. They have been invaluable in many other ways as well. Good luck and let us know how it turns out and if you have any other questions or concerns that come up and we’ll try and help.
Karen
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Thanks Karen, and I hope you are really enjoying your get-away!
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Dear Diane, I’m very sorry that your mom is so ill and that you are having to care for her in such an agonizing state of existence. I am an R.N., however my experience with chronic obstructive pulmonary disease (COPD) is very limited. My background is predominantly in psychiatric nursing. That being said, I’ve done some research and contacted a local pharmacy (well-respected) and Hospice. First of all, Diane, is Hospice involved at all in your mother’s care?…they are SO helpful with patients in your mom’s condition. If payment is an issue and you’ve not involved Hospice because of this, I’d strongly recommend that you contact them anyway. Medicare may be able to cover Mom’s care, which could be a huge relief in your situation.
I’m not surprised that your mom is panicky with breathing…she’s having a great deal of difficulty breathing-probably feeling like she’s trying to catch her breath-which is normal at this stage of COPD. Morphine can be very effective in helping to ease this shortness of breath. However, if the dose is too high, sometimes respiratory depression can be a side effect. This means the rate and/or depth of respiration may be insufficient. Are you having anything like Albuterol being infused through a nebulizer?? Finally, I’m assuming Mom is up-to-date on her influenza and pneumonia vaccines (??)
Not knowing more about whose medical care your mom is under-who else is involved besides you-I am hesitant to provide any additional medical advice. PLEASE DO call Hospice and/or the hospital you are receiving care through and ask any and all questions. If you’re still unsure about Mom’s care possibly being covered by Medicare, ask to speak to a social worker to answer some of your questions. You should not have to be shouldering so much of this on your own, Diane. It is obviously very physically and emotionally taxing for you.
God Bless You & Don’t Lose Heart, Diane!! I will be thinking of and praying for you and your mom. All of us here care about you a great deal. Please do keep us posted on any updates
Much love,
Ann
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Hey Diane, If Medicare can’t or isn’t covering your mom’s medical coverage, ask about Medicaid
~Ann
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Hi Ann. Thank you for your advise and encouragement! Mom is current on all her vaccines and we use the nebulizer 2 to 4 times per day. There is Albuterol in the solution for that. She also uses a variety of inhalers, one of which contains a long lasting albuterol. Have talked with both home health care agency’s as well as Hospice in the past 3 weeks. She does not qualify for medicade, so a private agency is out of reach. We discussed Hospice with her physician again yesterday and are in the process of scheduling an evaluation. So, may have some relief in sight! Thank you again for your thoughts and encouragement!
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Hi Diane, It’s good to get an uplifting report from you! I’m glad your mom has the inhalers to use, as well. I’ll cross my fingers and say my prayers about the possibility of Hospice, as I have heard so many wonderful things about the care they provide
~Ann
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Hi Diane, read your story and was very touched by your obvious love and devotion for your dear mom, but also felt your pain you described also. As a caregiver myself to a mother who has dementia, I think I can relate to that feeling of helplessness and isolation you mentioned. Are you currently receiving any outside support? You are suffering watching your mom suffer and my heart is breaking for you both. You should not be going this alone though.
I hope our positive thoughts and energies here at Don’t Lose Heart can help strengthen your spirits and please know I will keep you and your mom both in my prayers Diane. We are definitely here for you any time.
Karen
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Thank you Karen for your kind words and prayers!
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Diane, Was just reading about you and your Mom. I’m so sorry you both have to experience this. My Mom also had severe panic attacks (not daily thank goodness) but I know what you mean about the severity. I hated it when my Mom suffered thru one as her blood pressure and pulse rate would sky-rocket. We had to use drugs to calm her down. It’s such a helpless feeling to see your parent in such fear and anxiety and not be able to stop it. Although you feel alone and isolated, you are not. Hang in there. You have a lot of people standing beside you, in spirit.
Susan D.
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Thank you Susan. I can feel all of the positive energy and prayers!
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Dear Diane – Please know that we understand and share in your situation – you are not alone, although everyday you feel that you are. My Mom has COPD and is so far doing okay but I am aware of what is ahead for her as well as the rest of us. I understand the panic attacks – my aunt & uncle also had COPD – it is not pretty. My Dad was on morphine for a short while before he passed. Jean is right that morphine is a double edged sword. But I chose to look at it as a blessing as it gave him some peace and rest, even though it took him away from us. I hated that helpless feeling. My prayers are with you and your Mom. Please give her an extra kiss from me.
Joan
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Thank you Joan, and I do try to look at the morphine as a relief time for her. Appreciate your thoughts and prayers!
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Hi Diane,
I wish there were something I could do for you to help ease the emotional pain and isolation you are feeling and I guess the best I can do from here is to say as everyone here is saying too, you are not alone so even though you may feel lonely you always have us here on this site to write to. It is without conditions. Does your Mom have something special that might be calming, a special pillow, soothing music, something that can bring peace of mind? Do you have something near by for you? A special stone to carry in your pocket to rub when you are feeling alone, a pad and paper that you can write on? I do know that this isn’t easy at all and you are doing the very best you can when sometimes it is absolutely unbearable. My thoughts are with you. Melisa
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Thank you Melisa. Lightly rubbing her back and calmly encouraging her to slow her breathing down seems to help. There is always music playing, and I try to write when I can. Have lots of critters (the 4 legged type) which are always soothing for me.
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Diane,
I understand the panic attacks quite well. I suffered with them for many years and can imagine what your mom is feeling. This is a wonderful site, with many caring folks who have either been there or just have loving shoulders to lean your head on. You and your mom are in my prayers.
Lisa
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Thank you Lisa and I hope you no longer suffer with panic attacks!
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Hello Diane, and welcome into this helpful, nurturing and loving site. I too have just taken family leave to care for my husband. I have been his caregiver on and off for about 10 years and I am also my 90 year old mother’s caregiver. I am sorry for your current situation. In my experience, even thou there are friends and family around, no one really seems to understand the isolation and lonely, helpless feelings, we as caregivers feel, and have to try to deal with. Just know we are here for you,usually 24/7. So glad you found us, please stay in touch, if/ when you feel able to write. My thoughts are with you and your mom.
~Char
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Thanks you Char for your kind words and encouragement! It’s comforting knowing there are those who really seem to understand!
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Diane, just checking in and wondering how you and mom are doing. You are both in my thoughts and prayers. Hoping you have a moment to take care of yourself.
~Char
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Hi Diane. I just wanted to let you know that my thoughts & prayers are with you. It sure isn’t easy, is it?
Take care of yourself!
Denise H
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Thank you Denise! Nothing easy about it! Appreciate your thoughts and prayers!
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Dear Diane, you aren’t alone – we’re here for you. We’ve all been “there” and totally understand what you’re going through and know how horribly difficult this time is for you. You have so much responsibility on your shoulders right now; so many life-or-death caregiver decisions to make every day for your mother. It’s understandable that you feel isolated and helpless. The morphine is a double-edged sword, isn’t it? I don’t want to ask too many questions about the panic attacks and the morphine, because you’re probably too tired to answer questions right now. Just know that you have friends here, and we’re listening. ~ Jean
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Thank you Jean for your kind words and for being the instrument of starting this site. There are obviously many wonderful people here! Your right about the morphine being a double-edged sword, but it does give her some relief. The panic attacks are, so I am told, very common with people with lung disease. As the disease progresses, they become almost paralized with fear with any type of movement. Afraid they won’t be able to breath and feel almost like they are drowning. The system goes into high gear, they hyperventalate (sp?) and the body goes into a tail spin. The morphine helps to slow the system down some and calm the mind. The attacks usually last 1 – 2 hours from start to calm. Then she sleeps for a while.
Again, thanks for this wonderful site, and for listening!
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I had a panic attack once – in Hawaii, learning to scuba dive in choppy seas. It lasted just a few seconds, but it was terrifying. That fear of not being able to breathe is so powerful! It’s a survival mechanism that overrides logic and reason. Your poor Mom.
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Thank you Jean. It is frightening wittnessing it, can only imagine the fear of experiencing one!
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