New Year

Buggytoo

For those of us who placed our loved ones in MC in 2024, the New Year represents the first year we are no longer providing care 24/7. Nonetheless, we experience sadness, worry, and exhaustion as we struggle to reinvent our lives. We cared for our loved ones for so long until we truly couldn't anymore. We don't miss their agitation, meanness, confusion, outbursts, and incontinence. But we miss our daily connection and the occasional brilliant moments of understanding. Our next job is to navigate our way to a new meaningful life filled with compassion and caring but freed from the heavy weight of Alzheimer's care. Who are we without the daily struggle of loving care for our Alzheimer's spouses?

SDianeL

well said. I’m struggling to live my life without my Lonny and to honor him. I feel so lost. Hugs.

fmb

DH has not lived at home in over 14 months now. Although I have outsourced the 'blue glove' care and heavy lifting, I still struggle daily with other aspects of his care: advocating so he gets the care he is supposed to, driving the 1-1/2 hr. round trip to the ALF 4-5 days a week to visit him, jumping out of my skin every time the phone rings because it might be hospice calling. Struggling to fill my days when I stay home. Struggling with the grief and depression that wash over me and threaten to drown me at times. And struggling to figure out my current identity as widow/not widow as I edge closer and closer to Stage 8.

LindaLouise

Thank you all for sharing your feelings and thoughts here - so grateful for all of you and to know I'm not alone in all these feelings. I realized at Thanksgiving that, with my DH in MC since May, I would have to make it through all the holidays without him at home for the first time in 48 years. So hard, sometimes just hard to breathe. And yet - he is much less agitated and stressed away from all of the festivities. He doesn't seem to be aware of Christmas or Thanksgiving, so my daily visits with him are about his chipped fingernail or the pie he had for lunch. I, too, struggle with my identity, never having lived alone before and wondering what my future will be without him and not being part of a couple. I guess its all part of the grief journey - just glad I have my little dog for company. I also have a 93 year old mom who is very jealous of the time I spend with my DH that she thinks should be spent with her! Sometimes the absurdity of her demands makes me laugh and other times seems like just what is needed to feel completely devastated. Sorry- don't mean to ramble - but just appreciating that I'm not alone on this journey. Bless you all as we being 2025.

White Crane

Buggytoo, thank you for starting this thread. My DH went to MC on January 23rd, 2024. That was the hardest, heartbreaking, saddest day of my life. As we approach the one year mark and I look back on the year that just ended, my first thought is, "How did I ever get through it?" Of course the answer is with the help of God, my kids, and a group of wonderful friends…and a fantastic eldercare lawyer who guided me every step of the way through the maze of Medicaid and asset protection. This past year brought grief and sadness so heavy that it threatened to drown me at times. It has also brought sickness and surgeries. In January, I had to have surgery on my right hand and elbow. March brought a week of stomach flu that laid me low. Next came bronchitis in early summer. Fall brought melanoma surgery. Winter brougt swallowing problems and a hyatal hernia diagnosis. And I finished the year by getting Covid the week before Christmas. 2024 also saw me selling our family home of 52 years and downsizing to a small level ranchstyle house. It was only by God's grace and the help of friends and my kids that the move happened. And the new house brought the painter from hell who had to re-paint three times before he finally got the mess corrected. In the process, he ruined my dishwasher by washing his equipment in it, washed some type of clay down the drain and flooded the kitchen and clogged the pipes. The new carpet brought the discovery of asbestoss tile under the old carpet along with black mold. In between dealing with all of this was the spend down for Medicaid and gathering all the many papers necessary to file…and being rejectd twice before finally getting DH accepted. Some days all I wanted to do was sit beside DH in his MC room an have him hold me and tell me he loved me. Goodbye 2024! I survived you by the grace of God. 2025 finds me grateflul but tired.

Brenda

BPS

My wife had her stroke in March and has been in MC since April straight from rehab. I have been there everyday except 2 that I was having some test done. I have felt and feel all the same feeling you are talking about. I think this year my goal is to still go see her most days but take a few and go on short trips or do somethings fun that takes all day. I don't think she would even notice if I wasn't there every day, and she gets good care. It is time to try and start building my alone life. On the other hand my feeling about what is best changes frequently.

midge333

I moved my DW into MC on 12/09/2024. The worst day of my life. She is starting to settle in and I am slowly adjusting to my new life. I hope 2025 is better than 2024.

addy103

https://alzconnected.org/discussion/71639/new-year

This holiday season was a killer with my DH in MC. I feel so much guilt. I visit him twice a week and he seems happy. He even has a girlfriend. This whole situation is so heart wrenching.

jamielisbeth

> @Buggytoo said:
> For those of us who placed our loved ones in MC in 2024, the New Year represents the first year we are no longer providing care 24/7. Nonetheless, we experience sadness, worry, and exhaustion as we struggle to reinvent our lives. We cared for our loved ones for so long until we truly couldn't anymore. We don't miss their agitation, meanness, confusion, outbursts, and incontinence. But we miss our daily connection and the occasional brilliant moments of understanding. Our next job is to navigate our way to a new meaningful life filled with compassion and caring but freed from the heavy weight of Alzheimer's care. Who are we without the daily struggle of loving care for our Alzheimer's spouses?

I placed my husband in MC Dec 28th. Hardest thing I've ever done but friends and family assure me it was the right move. Now I'm living alone in a city far away from friends and family and I feel completely lost.

fmb

@jamielisbeth I'm sorry that you have a reason to join our forum. You are welcome to be here and have come to a good place for support, information and to cry and rant even.

We understand your lost feeling. It is something that many of us feel. My DH has been in an ALF for over a year, and I still feel lost at times. I have no supportive family here, and my only real friend with whom I can share my feelings lives in another state. This forum is a lifeline for me.

We understand, and we're here for you. ((hugs))

Palmetto Peg

I placed my DH in MC in late September, after a two-week inpatient hospitalization for medication management. This holiday season has been so sad, and I am so relieved that it is over. I see him every day, and am fortunate to live in a Continuing Care Retirement Community where the MC is actually connected to the complex where I have my apartment. I don't have to drive to see him, and can walk over any time. It is heart-breaking on so many levels, and I doubt that I will ever be over the trauma that dementia has brought into our lives. This forum is a life-saver, and you all have provided support in so many ways. Bless you all, and let's have the happiest New Year we possibly can! Many, many hugs to you!

jamielisbeth

@fmb This is the first time I've reached out to support from strangers. My DH had strokes without events and gradual behavior changes over 7-8 years. He was 1st diagnosed with mild vascular cognitive disorder 4 years ago,, FTD early 2024. I was so sure he would recover. So much denial. Due to cost of care in Alaska, I moved us out of state away from everything we loved for the past 40 years. He has a sister and her family here, and MC is half the cost.We're blessed with many caring family members and friends but they can't comprehend this pain. And guilt.

mrahope

I, too, placed my husband in MC in late April. This was very traumatic at first. He "blew up my phone" with text messages at first, but with the "disappearance" of the phone that has been better. We found out when my DS was trying to use his laptop that he had all kinds of pornographic material and had done some things that are borderline illegal, including potentially abusing our daughter. It was like an earthquake had upended my life to realize that the person I was closest to had done such terrible things. The anger and guilt are almost too much to bear. I have found myself unable to visit him since we found out about this. If I did, I would have to pretend that I didn't know about the bad behavior because he probably doesn't even remember it himself, or will have some crazy explanation. It's robbed me of any kind of closure. I'm grieving for the life I thought I had, and the harm he brought to both of our children, unbeknownst to me. I'm also feeling like a widow, but without the support that comes when one's spouse dies.

The good news is that, according to the MC staff, he has adjusted well and according to them is a "model resident" now. I'm happy to hear this, but at the same time it's almost too much to believe that the man who was screaming and throwing things at me on a regular basis is now behaving as one of the best in the facility. It seems so unfair.

Thanks for letting me put this out there. As my cousin said at Thanksgiving, when one "outsources" the physical care that doesn't mean the work of recovering is done.

Buggytoo

https://alzconnected.org/discussion/comment/232888#Comment_232888

I am so sorry you are facing this unthinkable betrayal by your husband. "Outsourcing the physical care" is an excellent way to explain why the emotional pain remains.

Carmen M

Thank you Buggytoo for this post. My LO initially entered a living center for respite on Dec 2, 24 for two weeks but then he was placed into the MC center permanently. I was not emotionally prepared for the placement but know it was the best decide I made. I am still struggling with feelings of guilty, lonliness and heartache. The holidays were especially difficult as we had not been separated during the holidays for 40 yrs. I visit him six days a week but will eventually reduce the days. I try to find activities to fill my day but just don't have the motivation at the moment. I know I need to find "myself" after these past 4 yrs of caring for my LO. But I am still struggling with the fact like those others who have posted with realizing the future plans we had made are no longer. I sometimes just feel numb and the tears start to flow.

Lilydaisy

https://alzconnected.org/discussion/71639/new-year

That was really poignant and touched me. I am not there yet, but it is coming. With caregiving we become our LO's memory, entertainment guide, driver, cook, and so much more. When that changes overnight the feelings must be very confusing. I guess it's the beginning of a different life, but in a transition that may take quite some time. Best wishes to you.

B2ingua

I am 9 years 6 months into this voyage. I am taking my DW to a day care and a mc tomorrow to try a baby step of day care and see how it goes. I don't know if there is some place to go for counseling or help for when is it time or when is it too much for me alone? We are 73 and have been together almost joined at the hip for 50 years; in 6 months married for 50.

SDianeL

https://alzconnected.org/discussion/comment/233438#Comment_233438

Bob, Many memory care facilities have support groups. I would ask them. You can also call the toll free number on the Alz.org website and they will assist. Last time I looked, Alz.org has online support groups if you can't find one in your area. Also look for a teaching hospital that has a memory care department. They are usually affiliated with medical colleges. Many of those have support groups. Another resource is to ask her doctor if they have a Case Worker who can help. Also an Elder Care Attorney can help you navigate the financial and legal aspects of her care. Being a caregiver is exhausting mentally & physically. If you start questioning if it's time, it probably is. She's lucky to have you. Cherish the memories you have made together. 💜