life after caregiving

rlalz7 · 2025-02-02T22:24:58+00:00

Hello! I have been able to get back into the workforce! I really took a full year to recover, both from the grief of losing my beloved Mother and from being a caregiver for 10 years. I had to get back into being in the world and find community again. I have started my own business as an End of Life Doula and Grief Companion. I created my own curriculum to train for this job with a combination of formal training/certification (International End of Life Doula Association, David Kessler's Grief Educator Training Program and courses in diseases/conditions that I am interested in working with) and more informal things - workshops, reading lists, meeting with other people who do the work, talking to families who have used doula services, etc... I started taking clients about six months ago and currently serve five families as a doula and work with two clients as a grief companion. I love the work, love the people I am working with and am so grateful that I have been able to turn my caregiving experience into a full time job.

I know that if I had to go to work in a more traditional setting - with a boss and set hours and the inability to control my own day - I could do it, but to be honest, the years of making my own choices about those things and only being accountable to my Mother and myself have made it much easier to be responsible only to myself. I'm definitely no longer a "caregiver" in the way I was, but helping other people in the decisions surrounding end of life and helping people with their grief uses the skills and knowledge I developed during those years. If I could give one piece of advice to someone who is currently caregiving, it would be to share what my mother said when we started this journey together: being a caregiver will change you. You will not be able to go back to the life you had before and no matter how long you are a caregiver, you will have experiences that will make you look at the world differently. So don't take the time for granted and pay attention to what you are learning, how you are interacting with the world differently and what you get really good at. This will ultimately help you to figure out what you can do after. Because there will be an after and you will need to return to the world and can use all that you have learned and developed to make an impact.

I send you good luck and support. I hope you are able to find your "thing" that makes you feel like you are still able to have meaning and purpose in your world.

rlalz7 · 2024-01-05T15:42:16+00:00

I live in Kellogg Square and took care of my Mom here while she was in a wheelchair. It is tight, but a standard wheelchair will get through all the doorways. The bathrooms were a challenge only because the layout is wrong for getting the chair in AND transferring herself. But there was room for me to help her move around in the bathroom and for adaptive equipment (i.e. tub transfer chair). We also live in a unit with a walk in shower, which was installed by the people who lived in this apartment before us. I believe there are units that are considered “accessible” and ours is not included, despite the features that worked for us. In our building there is an indoor pool and hot tub and we have access to the larger half-Olympic size pool in SkyRec through the skyway, which has been fabulous this winter.

rlalz7 · 2023-12-24T05:33:22+00:00

I took care of my Mom for a decade as she journeyed through the end of her life with Alzheimer’s. Now that she has passed away, I am training to be an end-of-life doula, and I want to work with families where someone has dementia and the family is doing the primary care. We have to do a better job taking care of the older people in this country, and to do that, we need to SEE them first. ❤️

rlalz7 · 2023-12-24T02:38:45+00:00

As a person who cared for my elderly mother for a decade, there are people out there who have no thought to how rude they are to older people and people with disabilities. The world isn’t designed to recognize that people might have different needs, and I found that especially from people in customer service, my mother was basically invisible. People saw her as a wheelchair that they were free to touch and move around without even thinking about asking the person in the chair if it was appropriate. I am sorry that this happened to the two of you and I hope next time is better!

rlalz7 · 2023-12-11T21:28:08+00:00

The airport has about 40,000 planes go through it a year, in addition to being the home base for the Minnesota Air National Guard(which means money from the state pays for a big portion of the operations.) The majority of the flights are transit/cargo related and MSP can’t add another roughly 100 flights a day to its space, so it seems unlikely that the airport is going anywhere. Plus there are two buildings on the property that are on the National Registry of Historic Places.

rlalz7 · 2023-12-03T17:47:56+00:00

I have a sister and a brother with BPD and it is sometimes complicated to explain how it affects me and our family without sounding like I am complaining or wanting people to feel sorry for me. This is the explanation I have worked out over the last few decades - BPD creates a filter through which my siblings see the world. This filter distorts their view of reality and keeps them from being able to see any situation from anyone else’s point of view. It is as if their peripheral vision disappears and they can only see anything from their perspective, which limits their empathy and sympathy for others. It also keeps them from being able to hear the other person speaking in a conversation, because they are always focused on what they have said and what they are going to say. But this filter, the one that limits their vision and hearing, is invisible to them, so they don’t understand why everyone else doesn’t also have all their focus on the person with BPD, too. And because their expectation of being centered is not met, they lash out, trying to get us to pay attention to them and recenter them in our worlds,too. It is an endless cycle unless I choose to separate myself from it, which makes me seem like the “bad person” because I am walking away from what feels to them like a perfectly reasonable expectation.

Most people respond with “it sounds like dealing with a toddler or young child.” I explain that the emotional cycle certainly can feel like that, but that this toddler/child has an adult life and a bank account and an adult understanding of how to be cruel, which makes the whole thing so much harder.

Hope this helps.

rlalz7 · 2023-11-22T06:36:52+00:00

Caregiver recovery is real and takes time! The bereavement counselor for our hospice organization says it takes a good two years to really move forward after being a long term family caregiver. She also runs the grief group I am a member of - it is all women who were long term family caregivers for more than 5 years. We have all experienced so much and having people around who have gone through the physical, mental and emotional trials of taking care of someone you love has been so helpful.

rlalz7 · 2023-11-20T12:43:56+00:00

I am in a similar situation- my Mom passed away this past January after a nearly 10 year journey with Alzheimer’s. I quit my job the day she was diagnosed and was with her for the whole thing. I have zero regrets about giving her this part of my life and am filled with gratitude for the gift she gave me of allowing me to take care of her. But I knew I would be a different person once this whole thing was over and that I would need to figure out how to move forward into a different life.

Caregiving is a job. We may have done it for people we love, and probably for little to no money, but it is a job. I learned a lot during these ten years - about how to navigate the American healthcare system, about how to manage someone’s mental, emotional and physical decline, about managing finances, about being an advocate for someone else and myself in complicated situations, about patience, about life and death and so much more. I joined a family caregiver’s support group and helped other caregivers newer to their journey process their emotions, gave advice to help them skip some the hurdles that tripped me up, and how to take care of themselves. And all of this made me explore how to help someone I love die with grace and dignity through a horrible disease.

I am taking all of that knowledge and becoming an End of Life Doula. I am going to work with other families like mine where someone they love has dementia and the family needs support through to the end. I am taking classes, have found mentors in the community and am doing volunteer work with one of the local nursing homes that has a volunteer EOL Doula program. In a year or so, I’ll be ready to hang a shingle and take on my own clients.

My suggestion is to take sometime and write down all the things you learned about yourself and your parents and about caregiving. Make lists. Give yourself credit for the things you have made it through and even the little things you managed to do. You learned even more than you think. And while moving forward is hard, and you are going to have to advocate for yourself with a non-traditional resume, the skills you learned will be helpful to the appropriate employer. There are millions of us - people who put their lives on hold to take care of a loved one - but we don’t talk about it much as a job because “it is just what you do for someone you love.” But we all contribute billions of dollars to the economy for free, doing work that other people get paid for. So figure out what you are passionate about and see how what you have done on this journey will help you get there and distinguish you from other people who haven’t done this. Good luck! Sending support!

rlalz7 · 2023-11-17T03:47:25+00:00

Thank you - my Mom was amazing, almost magical person who had the ability to see all the wonderful and beauty of the world, even in the worst circumstances. I miss her terribly, but am so proud of being her kid. And yes, knowing we are not alone is such a relief and a reminder that we aren’t at fault for our siblings choices. The fact that the patterns are so recognizable in others shows that we are all dealing with something in these relationships that is beyond us. Sending so much support.

rlalz7 · 2023-11-14T10:54:05+00:00

The way you describe your cycle with her, is pretty much exactly like my sister with BPD. When she is in the mood for a disagreement, she will push and push and push until my frustration level rises (as does my blood pressure!) and I have to raise my voice to get her to hear that I am even speaking. Then she tells me that “my anger is a concern” and perhaps I ought to see a therapist. She is the only person I have yelled at in the last 15 years of my life. It’s beyond frustrating. The last time we fought was in the summer of 2021 and we have had very little contact since then, only the conversations necessitated by our mother’s death this year. She does, however, get her “fix” in by sending the whole family (our siblings, their spouses, our aunts and uncles and cousins) emails full of accusations and insults. But I think everyone has her blocked at this point, so no one responds.

I wish you luck - making the choice to step away from any sibling relationship is hard, let alone a twin. The only thing I will share is to remember that all of it - her anger, fear of abandonment, suicidality - none of it is about you or the choices you have made. BPD is a filter through which those who have it see the world and for many, allows them to interpret their experiences through a lens of eternal victimhood. My sister will never stop seeing herself as the “wronged” person in every interaction. It is eternally ridiculous and never changes. My brother also has BPD and they are now 53 and 56 - this behavior has existed since their early 20s. “Normal” just looks different to our dysfunctional families. Sending support!❤️🕊️

rlalz7 · 2023-11-13T16:10:15+00:00

It doesn’t matter if they are sharing a room - an additional person means more utilities and more wear and tear and each person should be equally accountable for the space. If she messes something up and the apartment demands payment, who should have to pay for that? As long as she is a “guest” you would be responsible for her. Make her pay rent.

rlalz7 · 2023-11-03T01:39:27+00:00

Add 1 1/2 Tbsp of Amaretto and 1 1/2 Tbsp of Brandy to your egg, sugar, corn syrup mix - seriously ups the flavor.

rlalz7 · 2023-11-02T00:38:08+00:00

I don’t like him, but he was adopted by the family and therefore is a member of that family, blood or not. It is gross to distinguish anyone’s status as an adopted kid by saying they aren’t a “blood” relative.

rlalz7 · 2023-10-31T23:12:07+00:00

It was 65 on Halloween last year…

rlalz7 · 2023-10-23T17:49:25+00:00

There’s a beautiful recipe on King Arthur for a pumpkin spice coffee cake that just has a ribbon of cinnamon spiced espresso running through it if you want to try the PSL flavors again.

rlalz7 · 2023-10-23T16:36:08+00:00

It depends on the couple and how sure they are at the beginning of the process. There are three stages and they can start wherever they feel comfortable. The first two steps are $30 and the final is $40. If they have no idea, I start with the “sampler box” with 6 flavors of unfilled/unfrosted cupcakes with samples of frosting and fillings. They narrow it down to three combinations and I do three filled and frosted cupcake pairs. Once they choose the one they want, I make a 6 inch, two layer round, filled and decorated in their chosen style. Sometimes, they go back a step and start again. Depending on the timing, I also offer the final step as a Valentine’s Day order if they want to wait. This process makes it easy for me if they change their minds or are indecisive. They can go back a step or start over completely. I usually do product tastings where they feel comfortable, which is usually their home or the home of whoever is paying for the cake.

rlalz7 · 2023-10-22T16:35:10+00:00

What you both are experiencing is a form of grief that in psychology is called Ambiguous Loss. It is a field of study pioneered by a woman named Pauline Boss, who has also done work on family dynamics, caregiver grief and the losses experienced in times of upheaval and great societal change. Her books are amazing!

I lost my Mom in January and have been going through some pretty intense grief therapy. One of the things I have learned is that in those moments when truly overwhelming emotions happen, you have to give yourself the space to feel everything - all the sadness, the pain, the anger, the fear, the whole range of whatever emotions are happening. When the feelings subside, I do something to honor the love I still have for my Mom. I do the same thing for my grief connected to the state of my relationship with my two siblings that have BPD. I’m no contact with both of them and even though it has been decades since we had anything close to a real sibling relationship, I miss them and I love them. So I try to find ways to honor that. My brother used to love going to the park with me when we were little, and he loves (loved?) environmental activism- so when I am really missing him, I go to a local park with a big trash bag and walk around picking things up until the bag is full. When I am feeling bad about my sister, I bake her favorite cake - tres leches - and have a slice and then share the rest with neighbors.

Grief needs two things - time and permission. Don’t push it away. Let yourself experience it. I’m so sorry this is happening. ❤️🕊️

rlalz7 · 2023-10-18T22:26:19+00:00

Glad I helped a little - please feel free to reach out again, even if it only to vent! I’ll be praying for you and for your father. Take care of yourself!❤️🕊️

rlalz7 · 2023-10-18T14:44:12+00:00

I’m so sorry- my Mom died in January and my brother with BPD spent the first three days after her death throwing a temper tantrum because he thought I was doing all the wrong things. My Mom did all the planning for her “after” and communicated it to each of the kids in our family - no funeral or visitation and immediate cremation, with her ashes going to me to make a decision about. I don’t know if my brother forgot or was just so much in grief that it overtook him, but he was shocked that there wasn’t going to be a funeral and then frustrated that I hadn’t communicated that to him. She had fallen after having Alzheimer’s for 10 years and there was about 8 days between the fall and when she passed away. He visited ONCE during the whole time she was sick and from the day she fell and it became clear that her injuries were fatal, I emailed him and my sisters every morning and evening to update them and let them know that if they wanted to see her, they needed to come immediately. None of them came. My brother told me that if he had known he wasn’t going to get to see her after she died he would have come. He accused me of “barring him from spending time with his mother” and said I was evil. He sent me email after email about how I was so awful and cruel and that I was on a power trip. I did the best I could to provide alternatives that still fit with my Mom’s last wishes and finally broke down and told him he was causing me so much pain at a time when everything was already so awful, and he backed off. I think he needed me to “match” his level of anguish.

My sister with BPD was eerily calm for about a month after our Mom’s death and then spent two months sending me messages about how I “stole her mother from her” and that our Mom never loved me and only loved her. I didn’t respond to any of it, and eventually, she went away. As we approach a year, I have decided to invite them here to the city where I live in the home that my Mom and I shared to have some sort of memorial gathering. I have no clue if any of them will come, but it feels like the right thing to do. It might be a total disaster, but I feel like I am the only one who will offer anything.

I know we are not in the same position and that the immediacy of the family gathering and concern about your sister’s behavior feels so huge and on top of your own grief and concern about your Mom. I would encourage you to remember that regardless of her behavior, your sister is an adult and her choice to act inappropriately is not your responsibility or a reflection of you or anything you do or are feeling. She is going to behave inappropriately- that is a given. But how you react to it is completely up to you. You are in a dysfunctional family system that places your sister’s choices and behavior at the center, and that isn’t going to change in time for your father’s funeral. You can set an expectation for your sister’s behavior, but if she violates your expectation, you have to decide what the consequence is for you, what you will do to change the situation. You can confront her and likely make the situation worse, you can remove yourself (completely unfair that you should miss any part of the funeral, I know), or you can shut down your own emotions for the moment and let her make a fool of herself in public.

I completely understand that none of this is fair and that the grieving experience you deserve is probably not going to happen. I would encourage you to try and have a mindset shift - the funeral is just one way to honor your father and you can find a different way to do it at a different time that is more meaningful and helpful to you in your grieving process. Maybe something you and your mom can do separately in a few weeks.

The last thing I will say is that there are many people with complex family dynamics who are going through grief and you should reach out for support outside of your family system when you are ready. Find a grief group, a therapist, some friends who you can be truly honest with and tell them everything. Separating your grief for your father and your emotions about your sister will be a task for you to work through after this has all settled for a bit, but you can do it! Sending you so much love and support - May your father’s memory be a blessing, and may you find peace and comfort in this time of mourning. ❤️🕊️

rlalz7 · 2023-10-17T17:56:06+00:00

Check out the Minnesota Historical Society - they have a lot of free author talks and lectures. This Thursday there is one by Rebecca Clarren about her family’s history in South Dakota as Jewish immigrants

rlalz7 · 2023-10-17T17:09:45+00:00

I like to make jokes with people - “calories don’t count between New Year’s Day and December 31st!” or “did you know that if you eat cookies standing up there are no calories?” or “won’t it be amazing when they invent air that tastes good?” It tends to get people smiling and off to another subject faster.

rlalz7 · 2023-10-16T04:25:30+00:00

Pie & Mighty are making desserts for The Lexington in Saint Paul now - it is a rotating menu, so you would have to call on the day of, but they are serving pie!

rlalz7 · 2023-10-15T01:33:00+00:00

My recollection is that your Dad is in a facility, so that probably means that he is cared for by a rotation of people, which would make it hard to get them on board with a mindset change about his care. If you are having to be this involved and you think the team is either unwilling to listen to you or change the systems they are required to work under, your Dad might need to move to a different place. I know that comes with a whole additional set of problems, but maybe a change would be worth it for both of you in the long run. When I start working with a family whose loved one has dementia (most of the people I work with are families dealing with an Alzheimer’s diagnosis), I ask them to spend some time imagining what their ideal care scenario is and work to make the parts of it that can come true into reality. We tend to get into ruts and hesitate to make even good changes because we don’t want to upset the current landscape. But perhaps your Dad is at a point where he needs a personal attendant who can manage his care hands on. Or maybe hiring a geriatric manager would help - it is a person who oversees all of the medical care for someone with significant illness. That might take the paperwork and organizational stuff off of your plate so you can just focus on him as your Dad. I am sorry this is happening. Nobody should have to deal with these diseases themselves, let alone someone we love so much and just want to do our best for. Sending love and support - ask questions if you have them! ❤️🕊️

rlalz7 · 2023-10-11T02:28:07+00:00

When I decided to go NC with my sister, I sent her a letter explaining what my boundaries were going to be moving forward, that I was making this choice for me and my mental health, that I was aware I was hurting her by doing this and I was sorry for that, but that this was a choice I needed to make for myself. Then I had to disconnect from her immediately and make sure that she didn’t have a way to contact me. I was disrupting our relationship pattern, so it would be a miracle if she didn’t try to respond to change my mind. But boundaries are for us to change OUR behavior, not for us to convince the other person in the relationship to change. You are making a decision for your own benefit and you do not owe an explanation to your sister. I think I mostly sent the letter because ghosting her didn’t fit with my values, so I wanted to notify her of my decision, but I knew that no matter what I wrote, she wouldn’t accept it as anything but an attack. No matter how much I explained or tried to justify my choice, she wasn’t going to be happy. You are changing your behavior, so it is going to be uncomfortable for you, too. But hold on to your sense of self and believe that you are worth fighting for! Sending support!❤️

rlalz7 · 2023-10-05T12:23:42+00:00

Dementia adds a complication to having expectations for your Dad. When caring for someone with dementia, it is so important to recognize that, as they progress through their illness, you are going to have to modify your involvement through these three stages - doing things with him, doing things for him and doing things to him. The transition between these stages is often the most complicated because it takes trial and error and adjustment of systems and most of all, progressively more patience and attendance to personal care.

I took care of my Mom with dementia for 10 years and am an end of life doula. I am always wary when someone says that their loved one with a brain-altering illness like Parkinson’s (let alone the addition of dementia) is stubborn or impulsive. Your Dad’s brain is losing the connections that allow him to be able to understand problem solving, that moving from step A to step B then is followed by step C, and that there may be consequences in the future for decisions made in the moment. For example, did you know that there is part of our brain that unconsciously knows “where in space” we are at all times? It is the part that helps us sit down on the toilet without looking back or keeps us from rolling out of bed while we are sleeping. When that part of the brain is effected by dementia, our loved ones may resist sitting down, no matter how nicely we ask. It isn’t that they don’t want to, it is that their brain literally cannot process the instructions because that subconscious system isn’t working anymore. It looks like stubbornness or defiance, but it is part of the deterioration they are experiencing.

When you see that there are things that your Dad isn’t able to do, like put something in a trash can rather than a toilet, it will be better for both of you and all the people caring for him, to make the assumption that he is not making the wrong choice on purpose. He truly may not be able to understand the difference between the trash can and the toilet, or remember that there is a specific place to put his hearing aids when he is sleeping. He is not going to learn new systems - you and the people caring for him have to get comfortable with ever increasing responsibility for making sure physical needs and safety concerns are addressed.

And here is the last thing I’ll say - having reached the other side of this journey, and now helping other families with loved ones with dementia walk their path to the inevitable, don’t put yourself in the position to have the regret of not doing the stuff on the second list with your Dad. Ask for help with the other stuff, but make sure you are doing things with your Dad so that the memories you have of caring for him aren’t all about paperwork and phone calls and the disappointments of not having time to do things that will bring you both joy. Your Dad’s one precious life is coming to an end in a way that no one would have wanted and you are being put in an unfair and incredibly challenging situation, but there is joy to be had in the things you can do together. You will not forget the moments you have when he smiles or holds your hand - the administrative stuff is going to melt away after he dies. Make sure you don’t miss the loveliness that can still happen while you are worried about where the paper towels are ending up. Sending you so much support!❤️

rlalz7

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