Long term care

NLS2012

I am new to the forum. I woke up a week or so ago and was just researching things on ALZ, and came across various discussions. My husband is from a large family (20 siblings and 7 children), and dementia runs in his family. I had some idea what was ahead when he began to have cognitive issues, but I was optimistic that we could handle it as a family. He and I have no children together and have been married almost 13 years. I was sorely disappointed and hurt when the calls and invites to functions came to a crawl and then crickets. Mind you, when he was good, everyone was calling with requests for money, help moving, and all other things. I have never been respected as his wife, but just looked at as someone he’s married to. I want to choke someone every time I see or hear FOE(family over everyone). That’s a whole discussion in itself. I feel alone and have a very small community. I am navigating this journey trying to work full time. I had a care partner coming 5 days a week for 8 hours and I just recently added another person as I am having to go in the office once a week, now. Here’s my issue. My husband is like a two year old. He’s constantly moving things, unplugging things, tearing up things. You name it and he’s doing it. When he grabs things he shouldn’t and I or someone else ask him to stop or give it back, he has a comment and/or wants to fight. He has been put out of 2 facilities and another 3 respite facilities that we probably can’t return to. I am running out of options and am running on fumes. I can’t just drop him off on the side of the road. He’s not the nice little grandpa who you can sit in front of the TV, or hand him a puzzle to keep him occupied. Other than the dementia, my husband is physically fit. To look at him, you wouldn’t know anything was wrong with him. He walks constantly, and no matter how much stuff you move out of his path/sight, he just finds something else to get into. His favorite word is “no”. It’s a fight to change him as he is incontinent. It’s a fight to bathe him, get him dressed, get him in the car, out the car… you see where I am going. I am 57 and he is 69. No facility and fewer people are wanting to deal with this day to day. He’s been to Geri Psych at least 5 times. He’s on hospice because of the disease being terminal and not because he’s in the very ending stages of life. I am thankful for the resources as far as supplies and they pay for respite every quarter. I finally started doing self care, but it’s still hard. I feel like a teen parent who’s watching all her friends do life as she’s strapped with a kid and can’t do those things anymore. To say my faith has been tested and stretched is an understatement. I keep asking God what my lesson is in this. Or what lesson am I missing that this keeps being so hard. I try to keep in mind that just as angry and frustrated as I am, my husband is probably even more so. His world as he sees it is changing. His words and thoughts aren’t lining up, and then people correcting his every move. I try to sympathize. Then there are those moments where he does things for no reason, seeming to want to pick a fight or start an argument. When he sees you are quietly fuming, he then apologizes. I am tired of walking on eggshells. I am tired of no rest and/or not being able to make plans unless I know I have a “sitter” in place, with those options being limited to one or two people. They have boxes at fire stations you can leave babies in with no questions asked. There’s no such thing for adults who are stressed from caring for a loved one.

CindiEC

Have you spoken to hospice about medications that may help him? I’m sorry you are going through this. This disease is brutal and the toll it takes on us caregivers is unfathomable to those who aren’t experiencing it.

Milo4455

I can relate, our situation in very similar, and say that the disappearance of his family is the hardest thing to understand. Another thing, of many, that we just have to accept and move on. I'm too busy cleaning up DHs 'accidents' to spend any precious time on their shortcomings. Hang in there.

Maru

We asked for a Home Health Evaluation referral. They can offer a variety of things: physical therapy, speech therapy and other things. While you may think he doesn't need these things, what they will offer is an hour or two that you do not have to be physically present.

If his kids are being stinkers and won't help you, are any of them nearby? If so, give a call and ask them which day next week could Dad come and visit, then you tell them you will be back in 2-3 hours to pick him up. Desparate things call for desparate solutions.

Denise1847

https://alzconnected.org/discussion/74204/long-term-care

Please talk to his doctor about getting meds to manage his behavior. They should be able to prescribe something that tamps down his aggression and calms him. My DH is on Seraquel and it works well. Ask the doctor if a psych admission would be appropriate to regulate the meds. This disease will kill you as 30% of caregivers die because of the stress etc. As far as your faith, I get it. Read a book by Elizabeth Elliott called "Suffering is never for nothing". It may help you. As for family and friends, been there with the anger and disappointment. I believe their ignoring or forgetting us is typical. I was very angry, hurt and bitter for awhile. Then as my DH got worse, I asked myself if I would want to be around this horror if I didn't have to. I am now at a point where I have accepted and ever forgive that people try to protect themselves from the experience. For those who are not familiar with the disease, it is terribly disturbing and sad and they just can't cope/deal with it. Despite the compassion, sadness etc., I think we would all run away if it weren't for our love and commitment to our loved ones.

Prior to my DH's diagnosis and a life-changing fall I had, I had a dream in vivid color about my walking through a dark, frightening forest. I heard a voice that said "come through, it will be ok." When I walked through the scary forest, I came out on the other side to a gorgeous white sandy beach with turquoise waters, people swimming and laughing and dolphins playing. I truly believe it was His way and telling me that I was going to go through scary times but will get through it. Since then, there have been countless times when God has intervened to direct me with decisions etc. My learning continues on this journey. I can tell you the #1 lesson I learned was that I am not in control of anything and that I have put everything totally in God's hands and He is working it out very slowly. God wants us to depend on Him and draws us closer to Him for dependence and an intimate relationship. I hope I have helped.

Michele P

My heart goes out to you. Read The Calvary Isn’t Coming posted by Bill on this forum. It sums it all up. There is nothing else I can suggest that others have not suggested. You make all the decisions now. Do what you have to do and come back here for support and help.

wose

https://alzconnected.org/discussion/comment/254617#Comment_254617

Thank you….very helpful 💜

SDianeL

welcome. Sorry you are going through this. The book “The 36 Hour Day” was very helpful to me. The behaviors are typical in dementia. None of his actions are deliberate. It’s the disease. They regress and become toddlers. It’s mentally and physically exhausting. As others mentioned, he needs medication to calm his anxiety and aggression. You mentioned he was admitted to Geri Psyche. Did they put him on meds? In the late stages my husband had to be heavily medicated. We understand how you feel. You can vent here anytime you need to. I also recommend the book “When Bad Things Happen to Good People” by Rabbi Kushner. It was recommended by a nurse after my sister-in-law was killed by a drunk driver. Hugs. 💜

AlzWife2023

https://alzconnected.org/discussion/74204/long-term-care

"My husband is like a two year old. He’s constantly moving things, unplugging things, tearing up things." DITTO

"I feel like a teen parent who’s watching all her friends do life as she’s strapped with a kid and can’t do those things anymore."

DITTO

Hang in there, sis! Ask for help. I don't know how you can hold down a job and do sole caregiving. I've taken a vow of poverty to be a caregiver to DH. If I had to deal with a ft job, we'd both be in the looney bin or jail b/c I would have no patience or reserves.

You need a break. Is a day program available near you?

Metta

You have received excellent advice here already. Our situation is very similar, but I have been fortunate to keep DH home with seroquel, and he is unable to walk now, and getting calmer as the disease progresses.

We went through several aggressive episodes when I had to lock myself in my home office praying he would calm himself down in the middle of the night, or during the day with me sitting in front of the front door begging him to not wander outside in the 110 degree summer heat.

I also work full time and have no family support, and my caregiver is now down to 10 hours/week, but I work while DH sleeps, now 16-18 hours/day.

It is heartbreaking. The supportive community on this forum is very helpful to overcome feelings of isolation.

I have found Stage 7 to be more manageable, despite DH’s inability to walk, which presents new challenges.