Caregiver of DW 24/7 for almost 2 years w

DrNani

The most amazing perfect woman has Severe Rapid Dementia, diagnosed officially September 2024. When we bot( refuted early from our careers, we owned businesses together, so being together has been wonderful… well, until truly these last 6-8 months. I stepped down for. My latest BUSIENSS as CEO, June of 2023. After noticing she had donated almost all of her savings to charity. I love her more than ever, and I promised in my vows to her to take care of her, not placing her in a home. Which I am exhausted and aging very quickly taking care of her every need. Over the last few weeks, her decline has been rapid. She cannot do much more than shadow me, talk to whatever she is seeing, and walk… or wander. She doesn’t feed, bathe, clean, or turn on/off lights. Asking her to hit a switch when she stumbles to the bathroom at night, simply is a frustration of exorbitant amounts, especially when I get 2-3 hours of sleep. I would like to ask those who have been through this, as we all know this is our long goodbye, regardless of how long we experience this.

When yiur spouse who you’ve been the bet of full time care taker for. Goes into a memory home or passes, how does that affect you? I understand the grieving process. I am asking about the co-dependency? As this had already beeen very isolating, our very busy and full lives with literally hundreds of friends had dwindled to just us and a few. Plus our daughter and grandkids, does the co-dependency affect the rest of my life. How do we cope with the struggle?

SDianeL

it’s heartbreaking as is every step in this terrible disease. I had to place my husband in memory care last January due to my cancer diagnosis but I lost him 2 years before that. Visiting them in memory care is another kind. You are experiencing heartbreak now. You need to consider your health and well being. Alzheimer’s many times takes the lives of the caregivers before the patient. You will still be your wife’s caregiver by making sure she is well cared for and visiting her often. Don’t feel guilty. Get some well deserved rest and do things you enjoy that you put aside. We understand what you’re going through. My husband passed August 12.

DTSbuddy

DrNani Thanks for asking this question. Our situation is similar. In addition, unless supervised, my DH leaves water running, refrigerator door open, urinates in random places, waves down passing cars, puts on my clothes, takes my papers and phone, hovers behind me at the stove, drops food around the house, takes off his ID bracelet, and argues with me about my attempts to keep us safe and clean. I sleep next to him to help him find the toilet and then his bed when he wakens 4 or more times/night, and often clean up when his aim is poor. I don't feel I have a choice. I have visited memory care facilities, but am not ready yet. Much of the time, we are able to walk and enjoy nature, listen to classical music, and eat, and his smile tells me that he is still enjoying these activities. I cannot imagine life without him here. His friends occasionally drop by, and our son, but I have few social contacts. He has a paid companion who takes him for walks a couple times a week. I am struggling to keep the house and yard in good repair. I think I am just doing what I need to do for now. We need to take care of ourselves. The decision to get more help, including moving your LO, is not an admission of failure, it may be just facing reality. You can keep your promise by providing good care, wherever that may be.

Rick4407

My DW passed in April of 2023. I kept her home and devoted myself to her care 100%. I was able to do this by hiring a lady to take care of the house. I focused on my DW and our personal needs, cooking, laundry, exercise routines, etc. We went everywhere together, the grocery, my Dr's appts, just general errands. My focus was her and the vacuuming, dusting and general house cleaning all went to the hired helper. It worked out well for us.

It was no doubt more economical than memory care but the issue was no one could care for her as closely and carefully as I could. Rick

JoseyWales

Please don't feel like you've given up on your wife by placing her in memory care. It's not a failure on your part, either. Those that say you should take care of your LO until the very end just haven't had to deal with what we have. I remember those months when I slept in 2-3 hour bursts, and had to have constant eyes on my husband when he was awake. Which seemed to be all the time. I would never go through that again, it was a nightmare.

My husband has been in MC for over 2.5 years. I still take care of him by visiting, but now I get a full night's sleep.

LindaLouise

It is so true that this terrible disease impacts each victim differently. After 2 years of sleeping in 2 hour increments, and increasing agitation and anger issues; after calls to 911 when I couldn't get him in the house; and after not being able to get him in the car without security guards helping after doctor appointments; after he began to see me as the jailer and tried to break down the locked doors to get out of the house; my kids convinced me that to preserve one of us, MC was what was needed. Do I think they care for him better than I do? Yes - because there are more of them than just me and they have shifts, so aren't as exhausted. I'm there daily, and am still his "person", but now he sees me as a "good guy" and not the enforcer. Memory care allows him to move around, go inside and out, and see other people. Do I feel sad, lonely, guilty? Yes - all the time! I also feel scared about the cost…but this is the option that works best for him at this stage.

FTDCaregiver1

Since caring for my wife full time now these past 4 years (total of 8 years since onset), the first 2 years were the most difficult, having to retire early to stay home and provide 24/7 care. Sneaking out of the house to run errands, get groceries (we had no children, no family could/would help). Battles with health care in getting her stabilized with right combination of medications to address anxiety, screaming. A 6 month stint in MC involving 4 facilities (failures). Finally got some help in getting in-home daycare so I could get out and take time for myself and just do simple things like taking up a great hobby, eat in a restaurant again. Overall, though she continues to progress in this disease, can say it's being managed, in home with me, and feel grateful for help I've received from daycare workers, social worker to coordinate services and supplies, medications and Geri psych visits we receive. I get out most weeks to pursue my hobby, meet new friends and isolation, at least for me, is behind me now. Best of all, DW is home with me and getting the right care around the clock with good support.

DrNani

Need your urgent input. I have ACUTE Covid currently. I need to be seen by ER- also need to ask for them to keep her so I can recover.., SHE TOO has tested positive for Covid,