Managing Early Stages

Lisablock02 · June 24

Good Morning from Michigan,

I am the sole coordinator for my mom who is in "early" stages of Alzheimer's and recently moved to assisted living. My mom was overly independent for most of my life and this shift has been difficult for her as well as for me. I am trying to manage the constant contact over her hyper fixations surrounding money, items she feels she "needs", appointments, etc. I work two jobs and still have three kids at home and I am spending hours coordinating needs and managing the social aspect of her confusion and behaviors. I am wondering how others have managed this. What boundaries were helpful for you? Due to her inability to hold new information, I realize that I can't sit her down and talk through what her demands are doing to my mental health and ability to care for myself and my family and expect her to then move forward and hold that information with consideration. She can't learn new things and apply the information beyond the moment anymore. I also don't have anyone else in our lives willing to offer support and take on some of these things for me/her.

I am also wondering how long it took for your loved ones to transition from "early" stages to beyond. I know it depends on the patient and no one is really willing to give a hard number as it may not be accurate in her case, but the ambiguity surrounding this current status is also causing so much stress for me - the idea that I will have to shoulder this level of demand for years on end is suffocating to think about.

H1235 · June 24

I completely understand! I don’t know that I can share any great advice since I am struggling myself. Mom needs a new pair of pants. She wants to go to the store to pick them out herself! When I took her to the store to get new pajamas she wanted to buy black, silk lingerie🙄. I don’t take her to the store anymore ( many other reasons as well). I bought her a pair, but she was mad I bought such a small size. Took them back and bought a size bigger and she was mad that I bought such a big size. Everything I do is wrong! I have a brother that could help, but really only makes things worse. I take her to all dentist appointments, eye doctor (she is having cataract surgery, so there will be a lot of appointments), sleep doctor and hearing specialist. On top of this I pay bills and am trying to clean out her hoarders house. Even when I’m not taking care of one of these many things my mind is still thinking about how I should handle this or that with her, what I should do next with her house, wondering if she has been getting Worse lately. I have tried to remind myself I can’t do it all and I can’t make her happy. My health is important too (I now have high blood pressure). As much as I feel like her house is an anvil over my head, I am not going to work on it this summer. I limit my calls to her and she never calls me because she is so angry with me. I’ve started taking a mild anti anxiety medication and I try to take at least a short walk everyday.
I also struggle with how long this will continue. I just retired and should be enjoying my life. I am painfully aware that my health is probably the best it’s going to be right now. If I wait 5-10 years to travel I may not be able to do the hiking and steps that come with site seeing. But obviously I don’t want to loose my mom. But I guess I really already have. She hates me now. It’s so hard! I would encourage you to find some ways you can step back. Ask yourself what can give. Because something has to and it can’t be your mental or physical health. I hope you can find a solution that works for you.

MimiDIL · June 24

Hey guys! I don’t know that I have any great advice either. I have lost two parents to chronic health conditions. It’s such a paradox, but I will confess that as a longterm caregiver, I lived under the weight of, “How long will this go on?” “How long can I keep doing this?” and “I’m such a terrible person because I want this to end…but I don’t want to wish a loved one to pass on in order for it to end.”

I am now helping my DH care for his DM who has been living with a diagnosis of Alzheimer’s for the past 15 years. Her husband (my DH’s step-father) has been a rock star in caring for her…but he is not a young man, and we see the stress taking its toll…especially since we are seeing personality changes which makes her anger directed toward him.

I know it’s hard not to take it personally, but any anger your LO is showing is not the LO you knew. That person is disappearing. The ability to be rational is disappearing…either from fear, frustration, or the progression of the disease. I wish I had great advice to give you. The best I can do is to develop a rhythm with the MC or AL facility. Some days are a check in to pick up laundry, see if there’s errands to run, etc. Other days are for longer visits. But just be prepared to listen and maybe just be there.

As for the issue with the house, if you can afford it, hire someone who specializes in cleaning hoarder houses. My daughter and I do this. We meet with the client, agree on things that can be thrown away, put things you want to sort through into boxes, and slowly work through rooms. If you can’t afford it, you can use the same system: clear the clutter first, worry about cleaning later.

Prayers for all of you. It’s very hard. My DH and I have often said if we knew an exact time line, it would be SO much easier. But we don’t. We’re all just doing the best we can. Give yourself plenty of grace. If you didn’t care, you wouldn’t be on this forum.

SDianeL · June 25

welcome. You are correct that you can’t reason with someone whose reasoner is broken. She won’t remember what you tell her. Is your Mom in AL or MC? Do you know what stage she is in? No way to know how long the 7 stages will take. It depends on many factors including what area of the brain is affected by the disease. It could be just a few years or 20 years. I would not answer her calls. Let them go to voice mail and call her once a day. If you make the appointments, cancel all unnecessary appointments. Make up a fib for the reason. Repeat the fibs. Take away her credit cards or put a low limit on them. Don’t tell her. I think the time has come to take charge. She may be angry but it’s for her safety. How is she finding things she “needs”? Maybe tell her they are on back order? Sadly your roles are now reversed. It’s very difficult. We understand.

JulietteBee · June 25

https://alzconnected.org/discussion/73362/managing-early-stages

Oh how I know exactly what you are experiencing. While we do NOT want our LOs to die, it is absolutely terrifying to know that our caregiving role has the potential to last 15-20 years.

I learned about cognitive reserves, here, on this site. It appears that my DM has high cognitive reserves which explains why she is still able to schedule & attend her appointments on her own, though she is a stage 4/5.

Her IL facility provides free transportation to doctors' appointments. All I do is schedule the rides for her.

Her facility also provides shopping trips. If she wants anything, I let her go shop for it herself. I've tried getting her into online shopping. She does not like it. As an octogenarian, she is from the era that tries on outfits before buying them, or selecting the fittest produce by squeezing them.

I am disabled so mom is aware that I NEED her to do as much for herself as she can, while she still can.

I try to give her a 1-1.5 hour visit, three times per week. She is told the times I am not available by phone. In addition, I send her daily texts outlining her day & mine. She is told to reference my text as often as she needs to, if she forgets what she is scheduled to do or what plans I have for myself.

Those are the boundaries I had to put in place as I was previously casting all personal needs aside to tend to all her needs & wants.

My DH was/is extremely concerned about my health, fearing that if I continued neglecting myself, I may very well predecease her. He is the one that helped me set boundaries. Thankfully, mom respects them & remains grateful for what I do for her despite my being sick.

Managing Early Stages

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