How to handle the anxiety of knowing your loved one's time is closing?
My mom, who has dementia, is getting worse and I see the decline in her behavior and weakening in her physical functioning everyday. She talks with more nonsensical sentences, losing her vocabularies and walking wobbly and much slower movements. She has no anger or ANY tantrums, yet very polite and considerate. She is truly an angel with a kindness I haven't seen in my years!
Every day I see her melting away, makes me more anxious and sad and it's tearing me apart internally thinking the time is getting closer.
How do you deal with this on going worrying and anxiety on a daily basis? I understand we all pass one day and with this disease it only gets worse and not better. How do you handle the thought of something is going to happen one of these days to cause her loss. The thoughts of unknown (how she will go) is extremely difficult. How have you handled that? How do you prepare yourself for the unknown? What are the usual causes of passing in the last stages especially when physically your loved ones are in a great shape (NO cholesterol, diabetes, high blood pressure etc. etc.)?
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(That's what I tell myself when I get lazy, which is too frequently.)
This is distressing because the LAST day is permanent and you think you see it coming. However, with aging and dementia (and likely with lots of age-related illnesses), there's a lot of rollercoaster-like ups and downs that goes on before the end actually does come.
My mom was diagnosed with cancer in 1988, and I thought she would die. If I'd continued to stress out about that until she did die, I'd have gone bonkers, because she didn't die until two months ago. During the past seven years since her diagnosis with dementia, we thought she was leaving us in 2014, 2017, and 2020 before she finally did pass away on July 26. When that day came, I had come to expect it, but even so, I wasn't ready to close that chapter of my life.
You'll drive yourself nuts worrying about looking for the signs, so at some point you have to do what you've done every other day of your life -- take what comes when it comes.
They provide awesome support for both the patient and the family during the long slow decline.
I had the support of a wonderful team from the Nurse, the CNA, Social Worker and all the rest. I got the supplies, support and education I needed to help me care for my Husband.
All that said all the preparation in the world did not help the morning that he died. My Brain knew what it was supposed to know...my Heart however broke in two.
There is a great pamphlet that you can read on line called Crossing the Creek and it gives some pretty good information in a way that makes EOL (End Of Life) understandable and allows you to be more prepared.
When your mom passes,
if she is at home - call EMS to come and pronounce her.
If she is out of the home with you - either call EMS or go to the nearest ER.
If she has prepaid funeral arrangements, call after the EMS have done their job. They will take it from there.
If you do not have a prepaid funeral for your mother, it might be a good idea to decide on what you want to do for a memorial service. If there are not funds to deal with the remains, check to see if you can donate her body for tissue research. The facility picks up her body, uses the tissues needed, cremates the remains, and delivers them back to you within a month.
My Dad died at the age of 79. He took disability at 52 because of heart problems. He was pretty much bedridden after a hospital stay and Hospice was called in. Up till then he had shown no signs of Dementia but his mind had been failing. Mom was told he wouldn't last the weekend, he lasted 5 weeks and was able to enjoy Thanksgiving with his 3 kids and their families. TG day he could not talk just kind of grunted but enjoyed watching football with my brothers. At 10pm he was gotten ready for bed, Mom slept on the couch and those from out of town went to bed and the rest went to home. Mom woke up at 6am and Dad had passed in the night.
My Mom, she had been in a NH for 5 months when she started to hum which got worse as the days went on and she needed to be medicated for anxiety. The next thing, she closed her eyes and never opened them again. Then, she would not get out of her bed and was having swallowing problems. Hospice was called in. Mom stopped eating and drinking because her body was shutting down. She passed six days later, peacefully, after my nephews visit. We left at 1:30pm, she was pronounced at 2:50 pm. Mom was healthy except for the Dementia.
As Dementia progresses it effects different parts of the brain and that part of the brain dies. It has nothing to do with how healthy someone is when they pass it has to do with when the Dementia hits the part of the brain that controls heart and lungs. When that part of the brain dies, so does the person.
I would call Hospice in to have them evaluate Mom.
EVERY PERSON who comes into this world will eventually die. This should not be a surprise to anyone, yet over and over I see people who mourn and are wracked with guilt because they felt they 'could have done better'.
If you are caring for mom and see her inevitable decline, and deal with it in a positive way--look at it like the beginning of a great adventure for HER, instead of a loss for you--I think that would help.
I have walked right up to death's door with DH about 5 times---and I guess he wasn't ready, because he always rallied and came back. Went back to work, all the stuff of living. He is a liver transplant patient, so his dying has been thought about and planned for for many years. We're 15 years into his 2nd liver. He's only 69 but has had such an accident prone life, it's a miracle he's around.
Occasionally, I sit down and really think about what I am going to do when he does pass. It's just pre-planning, so when he does pass, it won't be such a trauma.
Our mothers are both 91. Cranky and miserable, for the most part. You can live far past your sell by date, for sure. DH's mom is way worse than mine is as far as mental health and he really struggles to care for her. My mom is just slowly falling apart. I expect she may well outlive me.
When the joy of life is gone---why would we feel anything other than relief that this earthly life is over?
In any case, Anxiety has been a huge issue for me throughout my mom’s decline. I’ve now had bouts of insomnia and full-on panic attacks. But I think I realized something: when I let myself lean into the grief and feel the sadness about losing her, the anxiety seems to abate. I don’t know if it’s because it’s physiologically hard to be sad and anxious at the same time, because unexpressed grief engenders anxiety, or what. But it seems like letting myself be sad is the healthier mental state.
I’m reading a book called “Anxiety: The Missing Stage of Grief” by Claire Bidwell Smith. It is written for those with anxiety stemming from unresolved grief (ie it is targeted to those who have already lost a loved one). But thinking it might help with anticipatory grief, I checked out an ebook version from the library. It is pretty good, and I suspect I may want to purchase a copy to read again if I need it. It outlines how a grief counselor specializing in anxiety would approach therapy.
Claire Bidwell Smith is a great guide to this part of your journey.
Two things I learned recently while on a much needed retreat. My stress comes from fighting God. Once I accepted the path before me and my Mom I gained peace. Mary stood at the foot of the cross. She stood. She didn’t wail and scream and toss a hissy fit. She stood. She walked with. She accompanied.
God never wills bad things for us. He simply makes good out of a fallen world as evidenced by Christ. Who also suffered tremendously. We are all born only to die in whatever is our destiny and way of death. I will be there walking with her until one of us is gone. And I will find joy there amidst the pain because that is love. No one promised us it would be easy. So I give my worry and stress to God in prayer. It is in asking that faith grows. The more I ask, the more I come into a personal relationship with God. Who knows - maybe that is the point? But I cry. I go to spend time before the Blessed Sacrament. And when I give in to fear and worry again - I repeat. That is all I can do. Don’t keep your anxiety and worry - give it to Christ - as many times throughout the day as necessary. When worry takes over, I replace it with a short prayer phrase. You mind can’t do two things at one time. Someone told me when you worry it simply means you don’t trust God enough. So when I am anxious and worry - I remember that!!
One thing that may help with your anxiety is to focus on the present. How is Mom right now? Is she clean and dry, warm enough, hungry? Don't concentrate on the past, or obsess about the future. Enjoy and experience the NOW. Have a conversation with your Mom, without correcting her nonsensical statements. Slow down and wait for her responses. Don't ask a lot of questions, just talk to her.
As for your constant wondering about the when and how of her final day...nobody knows that. You can expend a lot of energy worrying and wondering but that won't give you answers it will just drive you crazy! Knowledge is power so use that wasted time and energy to learn all you can about the details that worry you. (No need to become an expert on all aspects of dementia!) The Alzheimers association has books that can help you. And they also offer resources for people in your situation. There are plenty of support groups that can be very helpful and comforting. And you may even want to look into professional counseling if your anxiety has become very disruptive to your daily life.
It sounds like your Mom is a sweetheart, which is so much easier than a person who is difficult. Consider yourself lucky. But I must warn you that it could change. Dementia can affect personality.
Have you contacted Hospice? It's probably time to do that. Not only will they take care of your mother, they will also take care of YOU. They have lots of information to share with you about end of life expectations.
My Dad died of Alzheimers last summer at home, under Hospice care. I was there every day and as hard as it was to watch his daily decline I also felt somewhat honored to be taking part in his final transition. It's hard to explain, and yes, it was a terrible burden at times, but overall it gave me peace to spend those last weeks with him.
Wishing you all the best in these trying times.
For me, I deal with the emotions by labeling them & actually"feeling" the uncomfortable emotions so they can pass through and not get stuck. It's not a 'one and done' event though, I am having to label & feel the emotions a lot. It helps me get out of my head by releasing the emotions.
Maybe you can experiment with how that works for you. Maybe writing them out on paper and then shredding it may be easier at first. Today I can feel some emotions bubbling up so I know I need to give time and space for them to be released. Otherwise, my emotions will build on top of each other and it will feel heavier and heavier. If you are able, having a therapist to help you process what you are feeling can be so valuable during this difficult time.
The thoughts of preparing for the unknown is something I try to replace with realizing it's probably not good for me to know.... because that will affect my TODAY. I don't know if my time left with my mother is very short or much longer than I think it would be. Like swanalaka said, focusing on the present moment can help reduce our anxiety.
I hope all of the different responses from everyone can be a source of encouragement to you.
Much like a visit to Disney World, a visit to Earth has it’s great moments, it’s exhaustion, new sights to see and experiences to garner. Now you’re the one staying to ride more rides and she’s going home. Be happy for her. It sounds like the last rides frightened and upset her if she was angry.
Someday in the future, however, you will look back and feel very grateful that you were able to have this time together. You will feel pride in your relationship.
This is part of her journey and yours, and your love and generosity (with your time) are precious.
Challenge the dementia by making her life as wonderful as possible and giving her reasons to love her remaining time here.
If your mom is deteriorating, she may not be doing as well next week as she is today, so focus on the present. Sit down and write a “bucket list” of things you want to do with her and make every day count. If your list empties make another. Use this time wisely and don’t wish it to be fleeting.
If you need to, take enough breaks so that your time with her can be focused and higher quality.
Concentrate on small moments of beauty in your own life. Take time to get up a little early and watch the sunrise. Hire a caregiver to step in so you can watch a movie or even walk around the mall. Take some notice to enjoy YOUR world.
No one knows how or when anyone will pass. Instead of researching the end (which is unknown under all circumstances anyway), research and focus instead on how to make the middle the best and most enjoyable it can be for both of you.
“Worry doesn’t empty tomorrow of its sorrow, it empties today of its joy.”
My mother is 94 and has been with me for a year. We have had good moments and bad moments but they are “our” shared moments and someday I think I will be glad for all of them. A year ago I did not know what to expect but I guessed I would lose her sometime during the year. The medical professionals she interacted with before she moved in had all written her off even though her only real problem is age snd weakness leaving her bedridden. We were all wrong - she is still here and has some really good days.
None of us know what will happen. I try to live in the moment and treasure whatever joy I can find.
Ask if the outreach person you speak to or who comes to see you and your mom is a health care professional....or what they did before they came to their current job.
Sometimes the person hired has a sales background, not a clinical one.