Death of loved one. How to transitioning from caregiving?

steal and rock on, eh captain? I like that.

Helen, bless you. Your mother is so fortunate that you are her daughter. I too saw the last year of my fathers life as precious time together. It was ' 'not ideal' due to restrictions of his physical body
Declining & Severe Dementia setting in. But, i would do it all again- just the same. It drew my mother & I even closer as well. Now, mom & I are taking Dads passing 'one day at a time.' They were married 61 years.(which is so special)
The void is there, of course.. But I just keep a positive outlook for today, tommorrow & the yrs to come will pose new challenges. Im going to enjoy Mom (81 in gd health) for as long as possible.
I tell her 'it's our special Mom& Daughter' time.
Take care- :)

you dont transition, you steal someone elses mother and rock on.. its incredibly gratifying to fix the problems in a near helpless elders life.
when i get decrepit i have a son who will step up. he is a giver. you can see it when theyre quite young.

I currently am the sole caregiver for my mother for the last 6 years. She suffered a stroke during carotid artery surgery in 2006, My sister had her until Mar 2008 when I took her. I too am disabled, I am in tremendous pain 24/7 and most recently have severe arthritis in both thumbs, which makes it difficult to take care of mom. I receive no help from my sisters and when I asked for help they called me a martyr, aren't they special? They have accused me of all kinds of things, which is ludicrous, our lawyer says it's because they are unable to do this job and they are jealous that I can. This too is hurtful but I have put them out of my life....and I have done so much for each of them over the years, including loaning money, paying for college tuition, etc..... It also hurts my mother because they don't call her or Skype her because I am here, meanwhile, my mother can do none of these things without help......I color and cut her hair, we do facials and pedicures, we go for rides, limited because of the incontinence, if she is in the hospital, I stay with her as she cannot speak and I do not leave her. I do not feel resentment for giving up the last 6 years, I look at it as spending the time with her while she is still here and every minute is precious. We laugh, we cry, we argue (keep in mind I cannot understand her), we hug, we hold hands, I sleep with her some nights, my bed is in the same room but sometimes I am in the same bed, just to be close to her.We have lobster on special occasions and she always has fresh food, no salt allowed because of her heart. She is in stage 4 renal failure and I have to manage not only salt intake, but the meds I give her depending on what's going on that day. I am up every 2.5 to 3 hours during the night to clean her up and turn her so she doesn't get bed sores....... I love this time spent with her but do not know what I will do when she passes. Last year she had 4 heart attacks and since has been unable to stand to transfer to her chair or to the car, so that makes travel difficult. She has become weak, so can no longer feed herself..... I understand everyone's story above and have empathy. What I don't understand, are my sister's....

Wordytwoshoes: Once again you are so right in everything you say. My sisters would find a way to care for Mom if I wasn't here. That is why I thought the other day about checking myself into a hospital for exhaustion. I would have a couple days off, they could not b****, well only one does anyway, and the caregiving would be left up to them.

Family dynamics have been bad since my birth with my oldest sister....she never got over the fact I was born and has sworn to hate me til the day I die, so that is pretty much as bad as it can get. She filed a totally false report against me to Adult Protective Services saying I beat her up bruising and scratching her arms. My niece was there and was my saving grace and witness that I had never done what she accused me of. You know they put you through h*** when this happens and yet it ticks me off that they do literally NOTHING to the person filing a FALSE claim! They also NEVER return your calls nor tell you what the disposition of the case was....like dropped for lack of evidence! As if I do not have enough to deal with, caring for Mom by myself!

I like what you said about the friends who came by from time to time for lunch and I think I am going to check with a couple of long time friends and see if they might be interested in coming over for lunch now, and if I can get an outside "sitter" for Mom maybe I could meet with them every once in a while. One friend makes wedding cakes and I would love to watch her work on one.

I use to be so "artsy" and loved to paint, do crafts, sew clothing and make jewelry. I haven't done any of that in so long. I would enjoy taking a cooking class and I wish I could find a man who works with wood building things, because I found this site called Ana White, who makes all kinds of furniture and she shows you all the plans etc. I have most of the tools and saws from my father and I have done some building before, I just need someone to teach me how to use a router and a kreg jig. I want to build a large round birdhouse!!! I have also tried to enlist my daughter in going bike riding or walking as I know exercise is good for you mentally and physically.

Okay so there are many things I would like to do, now it is just finding out how to get there.

You asked about my disability and what it was. I am on disability for Panic and Anxiety and Gran Mal Seizures. I thought I had about kicked the Panic and Anxiety for life but it has begun again with all the stress I am under. The seizures are under control and I hope they stay that way.

I do try to watch funny things with my Mom and alone especially in the evening before bed as it seems to help with the panic and anxiety and my overall mental well being.

I know I need to be good to myself as I have arthritis, asthma, and pinched nerves in my back, I have been putting off all my doctor appointments just to care for Mom and that is ending. I have gone to see one doctor this week and have another one to see in 2 days. I just cannot keep doing this care giving without being cared for myself.

I know that no one is going to rush in and rescue me or take care of me if I should become sick or injured. I have to start putting myself first, a concept a bit foreign after all these years of putting everyone else first!

Thank you so much for your words of wisdom! I greatly appreciate it!!

HolyCow, your well-being is essential. What would your siblings do if you were suddenly to become ill or, heaven forbid, die? They would have to take care of Mom in some way, shape, or form.

Family dynamics, good and bad, flare during care-giving situations, so you may have to work on how you relate to siblings. If you look to them to volunteer and they don't, then you may have to become more assertive, yet keep it positive. Would you feel comfortable with making a schedule of your nights off? Let siblings, other family, and friends know when you are going to be gone and start scheduling people for your time away. If siblings can't/won't, then let them hire someone for their time slots. It's not easy, I'm sure, but it's worth starting. People don't realize how hard it is until they are in a caregivers shoes.

Healthcare providers suggested to me a full 8 hours away from caregiving. If you can find a way to do it, I also suggest a full 24 hours when possible. Other jobs get days off, holidays, and paid vacations! Let siblings know that you have somewhere to go, something to do.

I didn't even realize how stressed I was until friends began saying things to me. It's not that I was oblivious to my feelings but I kept trying to "be strong." After all, others' caregiving difficulties seemed more stressful than my situation . . . But in reality, living with someone with dementia for 5 years/24/7 can distort one's own reality!

My lifesaver came in the form of a friend who moved into the area and worked from home. She got stir crazy sometimes, so she would come over and we'd exercise, have a meal together, just talk, or watch a movie. Another lifesaver was an ex boyfriend of my daughter, who happened to move in to a place down the street. Being male and tall, he provided lift assistance several times when needed. I am so grateful for these two and others who kept in touch. When Dad got on hospice, I also had go-to people for informational and emotional in-home support.

HolyCow, there are also volunteer groups, and when your mom gets on hospice, that will provide extra hands.

But NOW is when you need to be good to yourself. I don't know what your disability is, but be as able as you can be. It's good for mental, emotional, and physical strength.

Because of a post on facebook, I started a Plank Challenge, then a Squat Challenge. Though I couldn't hold the planks as long as the challenge requested, I loved being physically challenged. My 35-75 second planks make me feel physically stronger and the fact that I stuck with it for an entire month at a time made me feel good mentally. I completed a challenge! I CAN stick to a healthy routine!

That' was good for me HolyCow. What would be good for you? Maybe you just need to get out of the house and try anything. Caregiving a long time can make you forget what you even liked to do. It also makes you question what's really important, and you may want something new in your life.

Finally, at home or elsewhere, do things every day that make you laugh, bring a moment of joy. I watched silly shows with my Dad, even though he wasn't one for TV or movies. My 2-year-old grandson was the only person that really made Dad smile, so when he visited, both Dad and I smiled!

Smile. Laugh, Be your own advocate. Love yourself. Really. It's not just touchy-feely stuff. You have a purpose and you need to be healthy to do it.

Keep in touch.

Wordytwoshoes: I feel for you and can see myself in everything you have stated when my Mom dies. How can I change things now to make my recovery better then?

May I ask you all a few questions? I care for my 85 yo mother and I do not see her passing away for several more years. When my father died in 2006 I thought we would be lucky to keep Mom alive for 3 more years, but 8 years later she is still going strong although her dementia and effects of medications for it are gradually taking a toll on her and unfortunately myself, my daughter, and my siblings.

I know that for many of us the stress has been so great that in a way we look at death as a release or relief. I was wondering if any of you that have gone through the death of your loved ones and you look back on it now, is there anything you wish you would have done differently? Is there anything you might have done during the time you cared for them that might have helped you more both then and now?

I am asking because I am the 24/7 care giver who is under enormous stress with little to no help at all from siblings. They work and I am on disability therefore the care giving was just a "given" in their book that I should do, because I am home. I have done it for 8 years with Mom and now my panic and anxiety has begun again because I see my life slipping away (61) and my daughter is graduating from college and beginning her life..... a life I have missed out on due to caring for both parents, an aunt and brother in law as well as being ill myself.

I can see myself becoming more depressed when my mother dies especially since I already feel like I have Post Traumatic Stress Disorder at times from what I am currently going through.

I need to "head this off at the pass" if there is anything I can do NOW to help save myself when Mom is gone. Although I am sure I will feel relief, I am also sure I will feel lonely, at loose ends, and just plain old "lost" when she is gone.

I had thought that perhaps leaving the house to take a class or visit a friend on a regular basis would help, even getting some type of part time job, but to do this I need the assistance of my family, which is not coming. As a matter of fact my older sister who lives with us stays at work 4 hours past quitting time (she works part time), so she does not have to come home and help deal with the issues of Mom. My therapist tells me I MUST leave the house each weekend and go do something fun with my daughter or a friend for my mental well being, however this same sister, has told me I can no longer leave the house, without her permission!!! My reply back to her was not a nice one! She has no right or authority to try and keep me at home, this is a jealousy issue. But it gives you an idea as to what I am up against.

If any of you could or would give me advice I would appreciate it.

Standing alone, you aren't unusual. Many of us never go back to where we were before caregiving. We have to struggle to find a new normal. Perhaps this article about finding the new normal may help a little. Meanwhile, we do understand. Your aren't alone.

https://www.agingcare.com/articles/after-caregiving-is-stress-the-new-normal-163252.htm
Carol

That is exactly how I felt like molasses in January. Very slow to get up and be productive and it has been almost 3 months now. Good luck with job hunting. If you are in a position to, I know that volunteering at a hospital, senior center, Red Cross, Meels on Wheels, wherever, will be very fulfilling and satisfactory for making you feel better. Even reading to kids in a school setting is very uplifting. Little kids ages 5,6,7,8, 9 are so wonderful and usually loving. I was a teacher for 43 years. the children always made my day……every day for all those years.

Spruneda how are you getting on with making long-term decisions? It is really difficult to know what is the best option, I agree.

Sorry for your loss! My Mother has been diagnosed with dementia. We've been staying between her home and mine. The transition has been challenging deciding which home is best to live in and finding the proper support.

My own mother died when I was 30 after suffering horribly for 10 months at home with breast cancer. She died in my arms. I had horrible nightmares for about 18 months every single night. If I woke up and fell back to sleep, they would start all over again. Be very very gentle with yourself. Take baby steps to get back into this world. I would drive and find myself miles from home without any recollection of going through toll booths or stopping for red lights. What helped at first was sitting on the back porch at sunset and sipping a cup of tea, listening to the ducks and geese on the pond quacking for the best spots before nightfall. The things my mother loved the most triggered off the worst longing and grief for her. I still have times when I feel like I have been skinned alive and its been 34 years but gradually, they are getting better. I am so sorry for your loss.

I'm sorry for your loss, and relieved for him that your father was spared the worst of the end stages of dementia. What next is something it's impossible to see for those of us who are still in this seemingly infinite space where you know that your parent will not have too long in this world but you have no idea what will happen or when. You've brought up an important point to think about, what we can do to be prepared as far as possible (I'm not sure you can do much, in advance), and thank you for that.

You seem to be managing brilliantly, taking positive steps. Don't lose touch with us - we need the guidance! Best of luck with your job search.

Well, notsopatient, I left my job in July 2012, and I'm older than you, so I'm nervous too about the job market. But belief and positive attitude really help. Found some really great employment services offered through WorkOne and a volunteer program at a church in Indy. I'm pursuing freelance work too.

My thoughts and prayers are with you all in your time of loss and grief. I believe my 90 yr old dad may be in the beginning stages of the end of life, he hasn't been eating or drinking much and he has started sleeping more he made the comment today, I guess I'm not going to make it to a hundred. I have been his caregiver for almost 2 yrs I don't have an income, we live off of his social security I haven't had a job outside of taking care of dad for a while I will be 50 in june and Im not gonna lie I am worried about what I'm gonna do when that time comes it will be like starting over again but with nothing oh well God will help me when the time comes. God Bless you all

Just found out about this spiritual writer (by chance on Good Morning America) and wanted to pass it on to all of you... look up Henri J.M. Nouwen... spiritualityandpractice/books/books.php?id=7025

All the different things that have said on this post are quite easy to relate to. Transitions are Tough.. To say the least. (Even the positive ones)
The feelings, fears,& anxiety that we have experience can be stifling. Time is supposed to
Help.. But I believe we also need to have a strong support system to 'help' nudge us along the journey 'back to life- a full & happy one.'
Without support we can simply stay stuck in our
Grief & Pain. My support system is like a
'Tool Box'.. Life is full of different circumstances.
So I have my 'Tools' to help me adjust, or fix my
Thoughts, feelings, anxieties, delimas, & hurts.
#1Tool- my animals-unconditional love & support.
#2- My 'Life Coach' As I call her. (Dr.Cindy- She is an Educated, unbiased, warm, caring, person that helps get me on track.) (Psd.D.) She has been with me through a Grueling Divorce,
Empty Nest, and now my Dad's Passing. I talk to her... She truely listens, (with a warm heart)
Talks to me as a 'friend', but has a way of nudging me on.. Forward in Life.. In a Positive way. She is a WONDERFUL influence in my life.
Note: Not all 'Therapists, Councelors, etc' are a
Positive addition to your sutuation/personality.
Please Shop Around- you can go to a first mtg.
If you are comfortable, return/stay.. But...IF NOT, Try a different one. (Trust Gut instinct-my advice)
#3 As you mend- movement/activities/exercise..
A little goes a long way.
(Ex:Walk to mailbox & back)
#4 Remember to 'Forgive Yourself for Setbacks.'
Take life one day at a time.
Every day is a new beginning.
Hugs to you.. You can get through this... not easy
But you can. :)

I went through a lot too. Being on here where my experiences still help others helps me a lot. The grief counseling things they had at my moms hospice were a little more geared to spouses but not bad for me either. I had those dreams all the time with one or both parents still alive and well or alive and needing me again and how could I not have been back to see them since everything happened... And dreams of stuff I forgot to do, but I have had that sort of thing all my life.

I think I kept doing the minimum of what needed done at work for the longest time, just now getting back to a few more academic pursuits. It was a while before I put up the things I got from my parents house and there are stroll a couple projects to be done with that. I have come a long way emotionally and I'm very slowly finding more peace and understanding, but it's only been three years and I know there is more. Will I ever enjoy without guilt, those aspects of caregiving that I will not miss being over, and the feeling of finally being on my own two feet and living my own life? Well, I'm getting there...

I did some writing too, shared with a hospice grief group leader and never got any feedback at all, which was kind of devastating. But I have kept all that in my Dropbox to go back to later.


Here is a prayer for peace and joy to begin to return to you with the spring this year, especially Monday as well as Wordy2shoes!

My condolences to you and your family. With my mother's passing it was a Godsend since she could not move, speak or care for herself. Know that our heavenly father wanted your father to be with Him to brighten up everyone. Keep thinking that as you go about your daily life and given time you will start to realize it was best that he passed. Alzheimer's usually has more than one affected with this insidious disease, and when the shock wears off, you will start to relax more. Let yourself be happy he is in a better place with no pain. :)

I'm so sorry for your loss. I'm a huge fan of Hospice before and after death. My mother cared for my dad for six-and-a-half years after he suffered a debilitating stroke. When he died, I encouraged her to get involved in a Hospice Grief Counseling Group. Her response was, "Oh, H***! I've been grieving for six years. I'm done with that!"

She did fine for about six months. And then one day she hit a wall. She started feeling guilty for all of the times she hadn't been as loving, patient and saintly as she wished she could have been. When she told me that she was waking up in the morning feeling the weight and warmth of Dad's body next to her in bed, it freaked me out a little.

I pleaded with her to start attending a grief counseling group. She did, and it was wonderful for both of us, because we learned that what she was experiencing was perfectly normal and natural. There was nothing "freaky" or unusual about her grieving process. She made new friends and was eventually able to give herself permission to enjoy her life.

My husband also attended a Hospice Grief Counseling Group after his first wife died from cancer. He will always remember her and cherish the years they had together, but he's been able to move on. We've had seventeen wonderful years together, and I'm not sure it would have been possible for him to move on without the help and support of people who understand the grief process.

So very sorry for the loss of your father, Wordy. Any info you can read should be helpful, particularly, the six stages of grieving. Counseling could help and support groups MAY help....not sure.

Though I have not yet lost my mother - there is no doubt in my mind that caring for a loved one changes a person. I doesn't "unchange" when they go to live in a facility or "I imagine" when they pass away. You are just forever changed. We have a circle of friends that swore their help when we took on the task of caring for Mother - one by one they fell away. I find I have very little in common with them any more - they have no clue what it does to a person to be a caregiver. Please give yourself some time to heal, let go of any guilt you may have had or have, and get some professional help. I am sure that your medical professional or your local Department of Human/Social Services can recommend a support group and/or therapists in your area. In the mean time - breath, let go and know that we here are all destined to be in your shoes at some point and send you all of our love.

It's so good to read your responses. Thanks Heart2Heart for your empathetic and understanding reply. It soothed me.

Don't worry wamnanealz, I knew what you meant. Captain, your advice really hit home. Thanks!

So far I have responded "appropriately." I know Dad's in a better place and I am relieved that he and I did not go through the totally bed-ridden stage that is often at the end of dementia-related diseases. I've gotten out with friends and family and am job-searching. But when home alone, I do feel kind of lost. Like my purpose is gone. Also, in a way I'm not sure how to grieve. I feel like I should be so happy to be able to go anywhere or do whatever with this new-found freedom, yet I feel as though I'm moving through "molasses in January," and I'm not sure what I want to do next.

Well, I do have to get a job . . .!

Monday, I'm so sorry that this loss is so unbearable for you. It must be that caring for her was your life purpose, and that must magnify the loss and grief. My heart goes out to you. The devotion you showed your mother is still within you and one day, when you can, you will be able to share that gift with someone else in some way. People need us. And we need them.

Caregivers understand other caregivers like no one else can.

monday,
there is loss of life all around us, even young , senseless deaths. life has some slams but for the purpose of perspective , be glad your not one of any of the earths animals. one misstep and youd literally be eaten alive.

Wordy2shoes...... sorry to hear of your father's death, but glad he is at peace. There is no easy way to transition from your caregiving role to the emptiness you feel now. I think you have already done the first step. That is by reaching out to us and talking about it. You will find much extra time on your hands. Try and find something that brings you peace. Also try and keep things simple for this time being. Hold onto the good memories and remember it is ok to cry. You've fought the good fight!

I'm sorry, Wordy...


I'm still trying to figure that out 3 months after my mom's death. I was her care giver for a long time. It's not that I don't know what I should do. I should find work, get into the real world again, make some friends, go do something enjoyable now and again... but I don't. I can't right now. Mentally, I'm shredded by this whole care giver experience. Maybe I'm extreme, I don't know, but this last decade has done some kind of number on my mind.

I don't want to go anywhere. I want to hole up like a wounded wild animal and lick my wounds awhile. I feel I've come out of one long hellacious war and I need to recover from it. Everything in me is craving solitude. Talking to you guys here is about all I want to do with humanity at this point. I've become very reclusive. It's all I can do to go to church with my neighbor, and I force myself to do that. She wants me to go tonight, and every night this week, for some event, but I don't think so. There's only so much socializing I want to do and it's not very much.

I like being alone now. I need it. I don't know how long I'll be in this mindset, but it won't be forever. It might take a little while and I'll give myself that for what I've lived these last 10 plus years. I don't know exactly how long 'a little while' is going to be. A month, a year, I don't know. I'll come out of this sooner or later, but right now the quiet, and my own company, is enough, is needed. Some of us heal in slow trickles.. I guess the point being, you jump back into life when you're ready. And that's it. Jump back into life. That's what it comes down to after this journey ends.

I plan on going to the bookstore soon. I'm going to spend some time there enjoying the smells of new books combined with that delicious coffee they make. Best smell ever. I might splurge and get one of their big, fat brownies, too. :)

One thing at a time. Personally, I'm going to have to ease back into life.

I'm doing a lot of babbling today... Lots on my mind..

So sorry for your loss. You are probably feeling not only the loss of your father but the loss of your place in the world as his daughter and the loss of your role as his caregiver. All of these are major life changes that are hard to deal with. First alllow yourself to grieve the way that is best for you. And you may grieve for the little girl who lost her daddy one day and the adult who lost some of herself during the time she was a caregiver the next. First be kind to yourself. Sleep when you can. Nourish your body and soul. When you are ready, begin to do the things that bring you peace and joy. Think of the things you wished you had time for in the past weeks and months and do them one at a time. You will think of your father often, when you do know he is with you in spirit and he is okay now. Bless you.

I am sorry for your loss. I don't come on this site often because it's too hard for me to read about Death.

My mom took her first breath in Heaven while in my arms in our home on the Sunday morning of October 6, 2013. It's coming up on 5 months soon and, for me, it has been utterly unbearable. I don't want to talk to anyone. I haven't lifted the blinds to look outside. I still have our Christmas tree up and keep it lit; I have our little pumpkin gourds on the bookshelf where I first placed them when my mom was here with me. I sleep with our dog in my mom's hospital bed that's still in our "living" room. I try to find reprieve in sleep and in going to the funeral masses of strangers. Nothing matters to me anymore except our dog. I cry all the time and just keep getting images of her before her stroke and during the years I took care of her and then the last few weeks of her life and then her death. I don't care to eat or talk to anyone or go anywhere or do anything. My siblings are both married and live out of town with their families. I am devastated by this profound loss in my life. I am trying to go on - one moment at a time but it is truly unbearable for me.

h*ll you learn so much in caregiving that it feels like a skill you should be using after your patient is gone.
whether you focus on another elder or not your mind will eventually clear up and youll get back into your own affairs with a pretty incredible determination and effeciency. at the risk of sounding sappy, make decisions that you think your deceased elder would approve of.

So sorry for your loss.. Hugs to you and family..