I am so new at this. I've been taking care of my dad for three months now, just about 24/7. I do have help. I work part time from home. I've been reading topics on the forums here since before I joined. I see that there are a lot of feelings family caregivers have from one end of the spectrum to the other. I've been trying to do all the positive reinforcements to help burn out. I have a wonderful husband and family to help, but one thing I can't control: The feeling every morning... Is today the day my dad will be at rest?
Every morning I wake up with a knot in my stomach. If I don't hear his TV on or any noise from his room by 7am I'm a wreck. I find myself checking in on him just about every hour, just to make sure he's still breathing. I feel so awful feeling this way. I can't seem to concentrate until I know he's awake and ready to get dressed for the day. I hate planing for future events because I don't know what each day will be. He has CHF and some other health issues. Most of the time is is well, just can not be left alone.
So, how do family caregivers get over this every morning dread feeling???
I'm so sorry you are struggling with those feelings of dread every morning - it's anxiety (and maybe some anticipatory grief mixed in) and that is something very hard to control. I would get anxious whenever the phone would ring wondering is this "the call" about my mom.
I experienced it when I was looking after my mom from a short distance. I would constantly call to see if she was ok and even bought a life alert system for her to use. I had the same fear and anxiety that you did. It was really hard because I knew she had a pool and wasn't a swimmer. She had refused to have a pool fence built and I was so afraid she would lose her balance, fall in and drown (my elderly childhood blind dog did that so the fear was really ingrained in me). So I understand your feelings.
You are doing everything else right, you have a wonderful husband and family to help you out but, your consumed with fear of the unknown and uncertainty. We all go through this or similar things when caring for someone whom we love and whom we don't or aren't ready to let go of.
I think you have to try and prepare yourself for what is inevitable - that one day your dad will leave this earth. Then you'll need to find ways to deal with the anxiety and fear. There are a lot of articles regarding those issues. I myself have had to resort to medication for the anxiety as it eventually created major health issues for me.
We simply don't want to lose our loved ones - that's what you need to work with otherwise, you will keep waking up everyday and go through the same issues. It really is no way to live. What does your husband suggest in those moments?
God is in control, He is not taken by surprise with anything that happens in our daily life and He has numbered our days - we can't exceed them. When it's our time, it is our time. Hold on firmly to Him and He will help you through this.
You will be in my thoughts and prayers as you try to face each day - take care of yourself, dad and family to the best of your ability - that's all you can really do.
A good friend who lost parents to cancer told me that he reminded himself while caring for his parents that he was doing the best thing he could for them, by supporting them, being with them, consoling them, and making the challenging and upsetting decisions at the end. That was advice I took and reminded myself of it constantly.
Toward the end, his qualify of life was nil, it was so challenging to see him that way, and my approach turned from prolonging his life to seeing him relieved of his discomfort and pain. I felt the same way when my sister died of metastatic breast cancer. Her agony was palpable, she couldn't talk, eat, let alone stand or walk. Her death provided her relief from that living h*ll.
But I also indulged in future planning, of what I would do with my life after my father was gone. It helped create perspective, and a reminder that life is impermanent, and we need to capture the best of it while we can to help us in the next phase of our life. Knowing that you're providing excellent care for your father, and take pride in that, even though the anxiety is always there.
Thank you for the kind words. I think your good friend found something helpful to help him through caring for his parents - that he was doing the best he was capable of for them, being supportive to them, spending time with them, comforting them and making those important and upsetting decisions at the end. I'm glad you have taken his advice and it does help.
I also have done those things and it especially has been helpful to say those things "out loud" if you will. I have also found that finding "one" thing even if it's small to be grateful for i.e. my mom isn't eating much let alone full meals so when I went to do a window visit yesterday, I was grateful she was eating a small dish of peaches. It may sound silly but, it really helps with your own attitude - similar to looking for a silver lining if it's even only a "sliver."
Also, I think the future planning is a very good idea instead of waiting until when that moment finally has come and your overwhelmed and in the midst of the grief.
I myself am getting ready to fill out the paperwork the mortuary has sent me, I have her burial outfit ready along with all the accessories and have sketched out a memorial folder as well as the obituary. This will alleviate some of the stress as well as the part where you don't or can't always think clearly when the actual moment arrives.
Journaling is still helpful which I did when my father was dying and I bought a pretty journal book for it and now it's a memory that I will never forget because surely by now after 16 years have passed, I will unfortunately have forgotten some of those special moments.
It really takes a strong, mature attitude such as your friend had to take the focus off of ourselves and focus on watching our loved one being relieved of the discomfort, pain and suffering. My daily prayer is for God to show His mercy and grace for my mom and our family.
Some anxiety may come from not being prepared for his death. Are there any unresolved issues between you two? Have you made plans for his burial? Do you know his final wishes? Spend time with him.
See if there's an dementia support group in your area, learn more about his illnesses by researching on the web, find books at your library, discuss your concerns and feeling with your church leader, seek professional help from a councelor, talk to your dr about your anxiety, You can also research "grief" what it is and how to minimize it. Waking up every day and dreading the day ahead can lead to some physical issues of your own. Choose to address your grief by talking to others and educating yourself. You can help yourself. Good luck.
I certainly understand your heartbreak seeing a once vibrant woman who lived in her own space now living in a NH with physical issues and dementia. I too feel as you do about my mom who will soon be 96 with Alzheimer's. It's been especially hard since she was completely mobile and able to dress herself until this past April when she nearly died at her ALF from severe dehydration, COVID and a couple of other things. She survived for which I'm extremely grateful but, she can no longer walk or dress herself, isn't eating much and it's so hard to see her in that condition.
I commend you for everything you have done to prepare for that day, the funeral arrangements have been made and paid for and you "got yourself" (which means you've made a conscious choice) into the frame of mind of taking one day at a time and realizing you have no control over when she will pass. You have accomplished a lot!
Continue to do those things - yes, you will still grieve when that time finally comes but, I believe you've been given the strength to endure!
Take care - and I'm glad you are there for your mom and I'm sure you are a comfort to her during her last stage of life.
You really just have to turn it over to God, and know that He has everything under control, and when it's your fathers time to go, it will be his time to go. I know that is much easier said than done, but if you can do that, you will find that you'll have a peace that surpasses all understanding.
So please just take one day at a time, and make the most of whatever time you have left with your father. God bless you and your family.
I hope you can find some support and maybe some ways to lift your mood. Music, little home projects, talking with friends, etc. helps me a lot.
I'm so sorry you have nobody while taking care of your dear mother. It's a reminder for us to be grateful for what we have because no matter what the situation is, there's always someone who has it worse!
May God be with you and your mother and guide you in your caregiving role.
I bet every new mom feels the same way when her baby first sleeps a bit late.
Is he on a routine schedule?
Wake at 7 am, shower, dress and breakfast? If not it might be a good idea to get a routine going that works for both of you. But if you don't want to do that there is no harm in checking in on him at 7 if he is awake you can ask if he wants breakfast, if he is still asleep check in again in an hour.
Because this is me I have to ask...Is your dad on Hospice?
Hospice can hep you through a lot of these questions and you will get supplies and equipment that you will need. You will also have a Nurse that will visit weekly, a CNA that will come in a few times a week to help bathe, change bed sheets, order supplies (if you want that type of help) Best of all you will get emotional support and education. (this is all covered by Medicare so no extra cost to you for all the services you will get)All it takes is a phone call to determine if he is eligible.
I had hospice for my dad in 2004 and now have hospice for my mom at her facility in memory care.
I will always be eternally grateful to them for everything they do and provide!
You could install a camera in his room where you could check on him from your phone or computer during the day without actually having to go in to his room.
Unless Your Dad likes you popping in every hour to say hi.
I have a 96 yr old dad with dementia and I have 24 7 Caregivers for him because he wants to stay in his on home and I know it's the best place for him.
I had Nedt Cameras installed so I can keep an eye on him and see that the Caregivers are treating him right.
It's also helpful so I can see that he is awake before I call to talk to him.
Im glad you have help watching your love one.
Juse appreciate the time you have and let God handle when the life is over as it is pointless to worry about something that you don't have control over.
At least it gives you plenty of time to get use to the idea and say and do what needs to be.
Your love one being with you is the best place.
People in Nursing Homes or Hospitals, Die Alone and that's so sad.
Prayers
I read the exact same thing about feeling like an orphan when your last parent dies in the book "Losing a Parent..." With my mom being under hospice care after nearly dying from severe dehydration and COVID at the age of 95 with Alzheimer's, I dread when that day comes!
The book you found sounds really good and I may need to get that one too.
I recently started taking Wellbutrin for the anxiety and stress. It seems to be taking the edge off, thankfully.
Prayers for everyone struggling with this issue.
Teresa
Instead of focusing on "that thought" try focusing on good things. Like how you can make each day "to be the best day" for your dad as you can.
Try to stay positive the best you can and put it into God's hand. He is in control.
I mean, we don't know. Just because we have this or that, we don't know.
I know a few people with CHF. They have had it a while. One has a defibulator and doing well.
My neighbor is 80 years old. He has had two tripple heart bypass surgeries and a defibulator with a heart rate 50. He works in the yard every day.
Hugs
A big hug to you - you are handling everything so well and to the best of your ability along with your focus being to enjoy this time with your dad.
You are as prepared as you can be for when that time comes and your dad is lucky to have you by his side and your mom was lucky too.
God bless you and give you strength as you face each day with your dad.
You cannot control when someone dies. You cannot prevent it by worrying that it will happen some day. You can only deal with what is happening at the moment. If your Dad is breathing in the morning, you begin your usual routine of helping whether it is toileting, bathing, dressing, feeding, whatever is needed.
If you or someone is in the house, then there is someone there if your Dad has an emergency. You might want to create a relationship with a Home Health Care Agency or Aide so you can hire respite help when you need a break.
I felt sad for many years as my father declined. It is almost the hardest relationship to see wane: a little girl's father is her hero and protector and even as adults our fathers still make us feel "safe." When a father becomes frail we feel a little less secure and we grieve for our defender.
Your father will live and die on his own schedule. Enjoy the time you have with him every day that you have it. As you say, it may be months; it may be years. Remember him and this time fondly when he is gone.
I did the same as you. I checked on her constantly. It’s so hard to be a full time caregiver. Stress levels are high.
Caregiving is a mixed bag of emotions. I was greatly helped by this forum and when I needed more I went to a therapist and attended a caregiver support group.
Things are different now due to Covid but most therapists are conducting telehealth sessions. Some support groups are doing the same.
I hope things will improve for you soon. Hugs! Take care.