Memory Care Do I or Don't I

Lp57$

Guys I have read a lot of info over the months of what you guys are going through.  Alot of it has been very helpful to me!  

I don't say a lot, because I guess everything has already pretty much been said about this dreadful disease!

But here it is - I had a meltdown! I am a Christian woman, and I don't cuss, but I was letting them fly this weekend!  It all started the latter part of the week, where I had to start sleeping in a separate room.  His hallucinations have not gone away, and he was taking his fist and beating the pillow I was on, I yelled out, and then he says sorry, so I lay back down and the next thing I know he is grabbing my face, I yelled out his name and again he said sorry! Well, I had had it! Then on Friday afternoon we head to a fast-food place and then he starts accusing me of running around on him and he was saying such terrible things. I was so upset I was crying and then he says I'm not hungry and later on that night, around 8 to 10 pm he is wanting to go for a ride and party, I said no were not going to do that! He starts saying he wants to leave here lately and starts heading out the door...  I managed to stop him by talking to him, but just today he is starting to leave and made it to the driveway, and I had to call our son again. He never has done this before, but I guess it is something new. Saturday, he starts getting ugly, yelling at the top of his lungs, wouldn't take his meds, just pours them down the drain, by then I have had it.. I had to call my son, and we went over to his house and I was going to drop his butt off and leave him, because i just did not care... Then I started screaming and crying and my son tells me to get in the house, so I get in there and he just holds me until I stop crying... He basically told me that "Mom this is getting to be too much for you!" He told me if don't so something you will be in the ground before him! I usually get a break every Wednesday to work and that is my only respite. We have been approved of the choice program, but they don't have anybody who wants to work! I have family that loves me very much, and they are so afraid that I'm going to have a nervous breakdown or have a heart attack.  This breaks my heart to have to make this decision, but what do I do? I was really hoping that I could have someone to help me out.  So I guess I just don't have a choice it is either me or him

sandwichone123

Lp57$, what a horrible weekend. I'm so happy you have family support. Your dh will not remember the events but you will. If you are able to get him placed he will still, perhaps, have hallucinations but the staff on duty will already be awake. He may say dreadful things about the staff, but those words will not have the power to hurt those folks as they can you.

Your son is right that at this rate you are not going to be doing well. You need more of a break than just an afternoon of work, and you need a safe place to sleep. Your dh needs more care and support than one person can reasonably provide. I'd say, based on the pattern, it's time.

Just Ro

It is a heartbreaking decision, but when you say,” It’s either me or him,” you are definitely at the end of your rope and it’s time.  I was becoming the worst version of myself while trying so hard to be the best caregiver for my DH.  I said the same thing, “it’s either me or him,” many, many times before I actually placed my DH in November. The first month was very difficult for me. I resisted the urge to pack him up and bring him home every time I visited.  I stayed strong, though, because I knew I would be right back to practically having a breakdown myself if I were to bring him back home. Who would take care of him then?  Your health and well being are every bit as important as his. We can’t make them well again, but maybe we can prevent our own stress related illnesses. I’m so sorry you have to make this heart wrenching decision, but you need help.  Hoping you find some peace in all of this.  It’s taken awhile for me to find any peace, but I’m getting there. I know he’s being well cared for and I know I feel better than I did before I placed him.

Lp57$

Thank you for the encouragement!  Just this morning I heard him waking around the house when i come from my room I asked him what he was doing he said I’m trying to find way out. I guess this is a new stage and now I’m more determined to get him the best help ever because what if he was to get out and get hurt! Oh my heart would really be sad then!  Thanks again!

harshedbuzz

I am sorry for this situation.

Weighing in having been the adult child in this situation, it sounds like the time has come for placement. 

One option might be taking your DH to a geriatric psychiatrist for medication management. As the disease impacts the brain, mood and behavior can really change. Meds can sometimes make a PWD less agitated and anxious which can result in calmer behavior. Should you go this route, it would make sense to make a couple short video clips of his worst behavior, so the doctor has a sense of the degree of aggression your husband has at times. I shared my video clips via email/patient portal because dad showtimed at all medical appointments and I didn't want to throw him under the bus in front of him. 

It sounds to my ear as if placement is necessary. A single day of respite is not going to be sufficient to recharge your batteries and even if you could find someone willing to take the hours for which you have been given by the "choice program" it's not going to keep you safe when they person isn't there. Your sleep is suffering and your health will be soon as well. 

My dad was difficult- I made a couple of those late evening runs to interrupt the cycle of craziness and I worried what might happen if I couldn't get there for some reason. I pushed for placement. I even toured a dozen facilities to curate a shovel-ready Plan B for when mom finally caved. I even had a SNF which would accept him on-the-fly 24/7 lined up should my mom be unable to care for him because of illness or death.

My mom did finally agree to placement after a particularly rough patch during which he was up all night threatening a murder-suicide. I basically told her she could pick his MC or I would put him in the cheapest place available if it fell to me and as POA ban all visitors but myself. (great irony there, the entire time dad was in MC his brother visited once as did his oldest grandaughter) She blinked. 

Alas, I did not act in time. Unbeknownst to me, my mom wasn't taking as good care of herself as she should have. I watched dad so she could keep appointments and managed the logistics of running their household, but she let prescriptions run out without refills, skipped a few meds because her crazy sister told her they were dangerous. A few weeks after dad died, we had a series of medical emergencies with my mom- BP was off the charts, her arteries were badly clogged, she was having a flare of vasculitis. They were able to pull her bacon out of the fire, but not before it cost her the vision in her "good" left eye. After totalling 5 cars (2 of hers, 3 people she hit including one who sued her) in under 60 days, she was forced to stop driving. When we moved her locally, we assumed she'd need a community that was walkable (she also has AMD), but with the cardiac issues related to her arteries, the downtown and club that are less than a mile from her house are often too far a walk. She'd been an artist, but finds her vision interferes with that as well. She is not enjoying the stage 8 I feel she deserved after faithfully caring for my dad and it breaks my heart and puts mileage on my car.

HB

Just Ro

The exit seeking was the final straw for me. DH would awaken at all hours of the very early morning and walk out the front door. My Ring cameras would send an alert to my cell phone that he was out in front and then I would get up and convince him to come back in the house. This was happening every morning between the hours of 2am-6am.  That usually worked until one morning at 6am (it was still dark out) I got the alert, but didn’t get out there quickly enough and he was gone. After my unsuccessful attempt to find him, I called the police and they found him about a mile away on a very busy street by the railroad tracks.  It was terrifying.  The exit seeking continues at Memory Care. He tries to get out every night, but he can’t.  You are right to be concerned about something really bad happening if your DH gets out.  I was very careful, but my DH still got away. Some have asked why I didn’t bolt that front door, so he couldn’t get out.  He was so determined to leave, I’m sure he would have tried any means possible to get out. The front door was really the safest exit because I had all the cameras set up to monitor him and alert me the second he stepped out the door.  Virtual hugs to you as you deal with all of this.

billS

Sounds to me like it is well past time to place him in MC unless his doctor can correct his behaviors through medication changes. MC staff will likely need to adjust his medications in order to make him manageable anyway.

Marie58

Lp57$, I can't tell you what to do, but I can say you have family who care about your DH and about YOU! I was sleep deprived, exhausted, very stressed and inching toward burnout when I finally agreed with my kids that I needed to place my DH. They could see things about me that I didn't see myself. Wandering and aggression are very serious for you and DH. If nothing else, start looking at places, talk to docs about meds, keep yourself safe, get more help and pray! God will guide you. I'm sorry it's so hard...

billS

Marie58 wrote:

Lp57$, I can't tell you what to do, but I can say you have family who care about your DH and about YOU! I was sleep deprived, exhausted, very stressed and inching toward burnout when I finally agreed with my kids that I needed to place my DH. They could see things about me that I didn't see myself. Wandering and aggression are very serious for you and DH. If nothing else, start looking at places, talk to docs about meds, keep yourself safe, get more help and pray! God will guide you. I'm sorry it's so hard...

I don't want to hijack the thread, but Marie can you describe how you explained to your husband why you were leaving him at the MC facility? How did it go, did he resist?

And to the original poster, as my wife's placement is looming I am finding safety is becoming a bigger issue. She has turned stove burners on and walked away so now I have to remove the knobs unless I am cooking. She has wandered out onto the road so I have to lock our gate. And today she set a cardboard box on top of the wood stove right after I had stoked it up. Luckily I was in the house and smelled the smoke before it burst into flames! So safety, hers and mine, is making placement a necessity.

Gig Harbor

One of my friends told her husband that she needed to have surgery and stay in the hospital for two weeks. She said she found a great place for him to stay with good food and lots of activities. He was excited to go calling it summer camp. When she went to see him two weeks later he was happy to see her but he had forgotten about home. He actually thought she lived down the hall. When she would leave after visiting she would tell him she was going to work and he was happy with that. She had actually retired several years before that time but he had forgotten. The staff would give him a pencil, paper and measuring tape and ask him to measure the doors for them so he thought he also was working.

Lp57$

Thank you so much for all of the encouragement!  I have prayed how I am going to tell him about staying but that is a good ideas about the surgery. I looked into a few that choices blue care would pay and just cried because they were so institutionalize, no warm feeling at all. The person I have working gave some ideas so I’m working on that. My DH could fix anything and that would be so nice that they could give him little things to do. Maybe I could tell him it is his new job. He still thinks he is working. Thanks again I will keep everyone posted.

Ernie123

LP57$: My heart goes out to you because of  the stress, heartbreak, anger, guilt, fear and sadness you are living through. Tomorrow is the anniversary of the date two years ago my DW was placed in memory care. Like you have experienced it was her delusions leading to violent outbursts that forced the move since I could no longer deal with her on my own. Sometimes she did not recognize me as her husband, thought I was an intruder, and would try and force me from the house. In a way it made the decision to move easier since I really had no choice. Her doctor, our children, my Alzheimer’s counselor all said the time had come. My advice to you is to face the fact your DH’s condition is progressive. He is not going to improve. Trying to continue providing his care is putting you both at risk. Especially when delusions and angry outbursts occur you are at risk. The move will probably be harder on you than him. I was advised it was better to move my DW while she still had the cognitive ability to adjust to a new living space and develop a sense of safety and security in her new environment. This in fact happened. Two years later she takes medication for her paranoia and delusions, and has responded well to living in a memory unit that has become her safe place where she enjoys the constant social activity. There are several ladies, all about the same level, with whom she spends her days. When I visit after a short time she will often want to return from her room to the common area because she wants to be with the others. The staff there are marvelous: every morning and afternoon there are simple activities provided. This social interaction is something I could not provide in our home and it is very important to her well being. The staff there manage personal care far better than I could. Showering and toileting her were a challenge for me, but they handle it with ease and she cooperates much better with them than with me.

I hope that my sharing my experience can help you make that inevitable step sooner than later. It will be hard for you but know what you are doing is best for you both.

Marie58

billS, my DH attended a day program at the MC he lives in now. He went for a little over a year for about 12 hours a week before it shut down due to Covid. I think that helped make his placement easier for both of us.

When it was time to place him, I told him several times that it was getting harder for me to care for him by myself. He had a couple falls and I reminded him that I couldn't lift him by myself. I told him the facility opened again and that he got to go there again. I mentioned the names of staff and residents that he knew and that they were looking forward to seeing him again. So basically, I just casually brought it up a few times a day in one way or another for about a week or so. I never really said anything like, by the way, I won't be picking you up at 3:00. He was basically nonverbal by then so it's hard to know what he understood as he couldn't comment. He was also late stage 6/early stage 7 so again, it's hard to know how much he understood. Everyone knows their LO best and I didn't think DH needed a lot of explanation. He was comfortable there before and transitioned quite well. I wondered if I told him enough ahead of time, but it turned out I did. Trust you gut, I guess, you know your LO better than anyone.

Lp57$

Ernie yes thank you for sharing I really appreciate it!  I wish you the best also and thank you everyone for the suggestion and encouragement.

Thanks

EmmaK

What is the best type of doctor to help navigate the medication and care for someone with dementia/Alzheimers disease?

My Mom has been recently diagnosed and we don't think her PCP (Primary care physician) is knowledgeable enough to help, nor the Neurologist who diagnosed her.

Ernie123

EmmaK: I suggest you post your question as a new topic as it would perhaps generate more responses than attached to this thread which is about placement. To answer your question, I would suggest a Geriatric Psychiatrist, especially if the symptoms are delusions, paranoia or anger. The medications prescribed for these more difficult symptoms of dementia are often antipsychotic medications that are used mainly with conditions like schizophrenia. A psychiatrist is best qualified to prescribe an off label application of these antipsychotics for dementia. If you are seeking advice and treatment for memory loss and cognitive decline, there is not much available that is effective. Drugs such as Aricept or Memantine are sometimes  prescribed as a possible way of slowing progression and can be assessed by your PCP or a Geriatrican. Also contact your local Alzheimer’s Society for advice. They can help with this and many other challenges you will face in the future.