Looking into Memory Care and Very Sad
My DH is currently in the hospital after he got out of the car when I was at a stop sign, refused to get back in, and crossed a busy 4 lane street during rush hour. Cars had to stop and change lanes to avoid hitting him. I called 911 while he crossed back over again and still kept walking and wouldn't get in the car. Police came and they were great - very kind, calm and helpful. He went to the hospital by ambulance and was agitated and aggressive toward nursing staff.
It started while we were on our usual drive after he says he's done with work and wants to go home. He gets very frustrated because I can't find "home" and insists that I know where it is and have stayed there overnight before. This time he also wanted to deliver some books and was again frustrated when I couldn't find the right houses. I tried suggesting neighborhood little libraries but that didn't work. A month ago he pointed a knife at me and demanded the car keys when I tried to distract and delay the driving around. I was able to calm him down and hid all the sharps after he went to sleep.
He has regressed even more in hospital, including muscle weakness and a significant increase in confusion. During most of the day, he thinks that he works there and is in a fairly good mood. During the sundowning period, he tries to escape and go into other patients' rooms. They have had to sedate him because of the agitation. For several months, he hasn't know who I am for parts of the day and gets suspicious and paranoid. He was hallucinating today, seeing small animals. Some of this seems like hospital induced delirium, along with progression of dementia.
The hospital care team feels that he needs placement and I know I can't keep either of us safe at this point. I'd have to use child locks when I take him in the car now and what would he do when he's agitated, angry, and locked in the car? I don't have any respite or home care and it would feel irresponsible to hire someone to manage this kind of behavior. But I still feel so sad and guilty. He's very dependent on me, and I feel like I'm abandoning this very vulnerable person. Even though I've really been struggling and dread each day of trying to care for him, keep him calm and entertained, and make it through sundowning without any major incidents. I feel like maybe if I had better skills, I could manage.
Anyway, sorry for this long post, but this is so painful We've been married for 45 years.
Comments
-
What a difficult time this must be for you and your DH. I hope they are able to find the best medicines to help him. None of us are miracle workers and you seem like your are doing your best. Home is an option with medication and trained home health caregivers . Memory care facilities are all a bit different so check out several . (((Hugs))) to you as you contemplate the next steps.
3 -
Life’s so hard and you never know what is going to be dished up to us. You sound brilliant to me your DH has been lucky to have someone so strong caring and thoughtful. None of us want this journey and we all do the best we can. Take care of yourself too so you will have strength for the next phase. Hugs.
5 -
My wife moved from the hospital to MC and yes it was sad. I felt guilty like I was giving up on her and abandoning her, but it was the best thing for her and for me. Now I wonder what I was thinking, there was no way I could have dealt with all that has happened at home, and I think it is easier to go from the hospital to MC than to go from home because it is easier to say it is for therapy from the hospital. It is very hard and I second guessed myself many times. I had to remind myself of all the reasons it was best.
4 -
My husband moved to memory care 46 days ago. I too have felt the overwhelming guilt for placement, the questioning and wanting to bring him home, but what I have learned is that I can be a better wife and friend now that he is physically taken care of. I don't make the rules, I'm just the good person now. After the initial (terrible) adjustment period I have found that I can visit and we can do things together, I can take him out for walks, drives, meals and he is very happy to see me. I am still missing him so much because everything in the house reminds me of him and our 50 year marriage but I am adjusting and learning who the new me is. Yesterday he was just so happy to go for a long ride to an area we used to visit and to have gelato. He cannot chose things easily but could decide on the gelato flavor, comment that he hadn't been around here for a while, happily noticed things he was familiar with. Thanks to all who have shared their journey. Mitsu2 I wish you well if you decide to place him in memory care. It is the hardest thing most of us have ever done, but I am glad I did it and to share there is hope for better days for you and your DH.
4 -
I'm so sorry. That must have been terrifying.
I had no idea how much guilt this journey would force us all to work through. I mean…here you had the amazing skills to calm a situation where your DH was pointing a knife at you, and you're beating yourself up with guilt over needed more skills. I'm in awe of the skills you've brought to bear already!
I truly believe that the only skill/expertise needed and helpful at a certain point is which medications need to be utilized to manage behavior.
Your gut and knows the right path for both of you.
Hugs
5 -
I’m so sorry for what you’ve been through, it must have been terrifying having him running into traffic. Calling 911 sounds like the right choice.
My husband was an avid hunter. During his evaluation with the neuropsych they recommended taking all his guns away from him. Your scenario with the knife has been on my mind. How does one keep those in our care - and ourselves- safe 24/7.I’m brand new to all this and can only hope that I’m able to develop the skills and calmness that you have.
Take care of yourself.2 -
So, so sorry you are going through this. So glad he wasn't injured & is getting care. Sadly, I don't think better skills is the answer for you. I think your guilt may be telling you that. No need to feel guilty. You have done so much. Skills only go so far in caring for someone with late stage dementia. He needs medication for anxiety, agitation & combativeness. It may require heavy medication. He needs a safe environment where he can't wander. He needs 24/7 skilled care. Not many people are able to do that on their own. Hiring 24/7 care at home is very expensive and then you would still have the safety issue. Whatever you choose, remember you're doing it FOR him, not TO him. You will still be his primary caregiver, just in a different role. You will still monitor his care and make sure he is well cared for. If you do place him in memory care, I would be hesitant to take him away in a car unless you use the child locks and place him in the back seat. Even then if he could reach you, he could cause an accident or hurt you. Each PWD is different, some who are more calm can go on car rides with no problems but others it can be extremely dangerous for both the PWD & their caregiver. Please keep us posted. Hugs. 💜
1 -
The guilt associated with placing a loved one in memory care can be debilitating. It sounds like you cannot reasonably bring him home directly from the hospital. However, you are (as mentioned above) in a situation where you could tell your husband he is going to a rehab facility until the doctor says he can come home. With the proper medications and modifications to your house it's possible that he can come home at a later date — it all depends on so many things.
I was able to bring my DH home after a year in memory care, but I think that's the exception. My criteria were that we had to both be safe and able to sleep. It took a long time to get to that point, but we did.
Sending you so much support and hugs. This is a horrible disease and you are in a horrible situation. Please know that the guilt, while strong, is not based on reality. You are making decisions to keep him as safe and as comfortable as possible while keeping yourself safe too. I know it just sounds like so many words, but it's true.
2 -
Jazzma is absolutely correct. There comes a time for many of us when, for various reasons, MC can do the job better than we can. There is no way to be safe with an aggressive person, especially when the PWD is larger and stronger than the caretaker. We can hide the guns and the knives, but almost anything can be a weapon. In fact, most men can kill most women with bare hands, as is demonstrated far too often during drunken brawls.
Guilt is a normal feeling, but it isn't warranted unless we abandon our LOs in highway rest areas. We do our best, and the best is all we an do.
3 -
My husband entered a memory care facility two months ago. The kicker was when my daughter who has truly walked this path with me told me she was now more worried about me than her dad. You all know the drill, chaotic broken sleep because you watch over your loved one, constant worry, increasing withdrawal. I was in bad shape. My husband has mostly adjusted. I am lonely. Still, the situation is so much better. For the two to three hours I spend with him each day, I am again his wife, not his keeper. Lose the guilt. Grieve, but this is not your fault.
6 -
My heart goes out to you. We are at the start of this journey and making decisions together now for what will come in the future. We got our legal affairs in order and are touring memory care facilities now so that we can get on a wait list. The process is gut wrenching and depressing. You have to do what ever you have to do to keep both of you safe. Find a facility now and get on a waitlist with a refundable deposit so that this option is available if needed in the future.
1 -
This is an addition to my first comment. My husband went from the hospital to a secure memory care unit funded by Medicaid which all we can afford. He's been there for a week and as I expected, he's so unhappy. Visits are difficult because there's no privacy. He has a roommate who follows us everywhere. A CNA told me the roommate is bullying him and does that with all of his roommates.
After lunch today, the nurse told everyone to go to the TV room, which was crowded with nowhere to sit, and noisy. When people yell for help, DH feels like he needs to do something. There are no set visiting hours, and no where else to go on the unit even if there were. We tried going to his room, but the roommate followed and wanted me to empty his catheter bag. He'd already asked staff and was told he needed to wait.
DH is now on 2.5 mg of risperidone morning and evening, and 25 mg of sertraline, the kind of medication regimen that could have delayed this crisis if he hadn't refused treatment. He's confused and is trying to avoid going in his room. He's never been a TV watcher so he was just wandering the hall when I left, trying to talk to the people yelling for help.
I spoke to the nurse about the roommate situation, but there aren't many options at this time. They put them together because they're the two most alert patients on the unit. He said he would talk to the director of nursing. I can't imagine this as his long-term residence. We have Medicaid pending and will have to pay $200 per day starting on Day 21, since at this point, it's considered rehab paid for by Medicare until medicaid is approved.
Anyway, I just cry in the car after each visit.
4 -
Sharing love to you and hoping you stay strong. The lack of real support we all need is heartbreaking. If you are both safe, it is a positive. Hang in there. We are with you.
1 -
so sorry you are going through this. I know how you feel. Many who have their LO in self pay facilities also feel that way. My DH was in a VA facility and had a roommate that cried a lot. My DH also wandered the hall. He called it his “work” . Many PWDs wander because they can’t watch TV anymore. It’s heartbreaking to visit them. The guilt is overwhelming. The important thing is that he’s safe. Praying for your strength. Hugs. 💜
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 564 Living With Alzheimer's or Dementia
- 297 I Am Living With Alzheimer's or Other Dementia
- 267 I Am Living With Younger Onset Alzheimer's
- 16.5K Supporting Someone Living with Dementia
- 5.5K I Am a Caregiver (General Topics)
- 8K Caring For a Spouse or Partner
- 2.6K Caring for a Parent
- 217 Caring Long Distance
- 134 Supporting Those Who Have Lost Someone
- 17 Discusiones en Español
- 5 Vivir con Alzheimer u Otra Demencia
- 4 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 12 Prestación de Cuidado
- 3 Soy Cuidador (Temas Generales)
- 8 Cuidar de un Padre
- 23 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 8 Account Assistance
- 15 Help