Combative and Unreachable

Daughter of a Marine

I'm reaching out to the most knowledgeable group of individuals who never wanted to be here, hoping someone may have some insight and guidance as I have reached my wall. My DH, love of my life, married 56 years, has been in memory care since last July - he has mixed Dementia - alzheimers and vascular. Diagnosed 15 yrs ago and progression was gradual but he is currently in stage 6 and has become literally unreachable. He is 6'1" and still quite strong though he is losing weight. He has become extremely combative with staff when they're attempting to change him or redirect him - won't allow it and will swing his arms around, typically resulting in bruising and skin tears. Language has become a challenge as he can no longer use understandable words - he's making up his own language and is not responding to words spoken to him. If I ask him to sit down, he does not understand and I am literally hurting myself while working with aids to get him changed, toileted, bathed, etc. At the moment, my back and wrist are both sprained. A complicating factor is that he is fused from L1 to S1 and needs narcotic pain meds for extreme arthritis. This of course causes severe constipation. His bedtime meds are seroquel, trazadone, melatonin, extended release morphine and hydrocodone. Last week at 2 am while trying to get to the bathroom he fell and I believe his fall was due to the fact that he is getting too many narcotic meds at the same time and is a fall risk. No one seems to be able to manage his medicinal needs or to know how to help him given his communication limitations. Just wondering if this scenario is familiar to anyone and whether someone can offer some guidance. I don't know where to turn or how to help him. He has always been the most gentle soul - even now, he takes the hand of other residents and says God bless you. He deserves better. Thank you so much in advance.

Arrowhead

I cannot answer from my own experiences, because it hasn't been an issue in our situation. However, I have read a lot about other people's. I'm sure you know that anger issues are very common and can be brought on by the disease. Normally a drug would be prescribed to deal with such issues. I noticed that your husband is on a lot of different medications, and I wonder if that might be a contributing factor in his case. Sometimes it takes numerous adjustments to medications; adding, subtracting, replacing one with another, and/or amounts taken. I hate to say it, but there may not be an answer in this case.

As for communication issues, I do know about that. Unfortunately, they reach a point where verbal communication becomes impossible no matter what you do. Physically directing will help for a while, but eventually even that disappears.

Biggles

I am sorry I have no help to offer except to say it’s so sad and I feel for you. We have been married for 54 years and my DH is the love of my life, I know how you feel and I wish I could help.

harshedbuzz

@Daughter of a Marine

I am so sorry you and your DH are living this nightmare.

You are describing a situation that has no real solutions. In stage 6, he is a fall-risk. Adding the necessary pain medication and Seroquel is going to increase that risk considerably.

About the constipation piece, there are medications to help with that including this one.

https://movantik.com/

HB

blueheron

can he use a urinal at night so he doesn’t get out of bed?

Kat63

My DH is this same stage of this terrible disease, although he is still home with the help of hospice. My husband too is a big man, 6 ft tall and although is losing weight still weighs 200. He is on Seroquel and Dapakote and melatonin and yes he has fallen some. According to Tam Cummings at the end stages, falling will happen as their brain is so damaged and the brain controls the body and cannot communicate with the legs as normal. It’s why they shuffle, etc. As far as trouble changing him, I have noticed my husband ( who like yours was always easy going) will be more difficult when he is tired. I let him sleep in his clothes now and change him in the morning when he is rested. I also make sure to tell him everything I am doing and ask him if it okay, such as, “let’s change your shirt, is that okay.? is this one okay to wear today? “. I also make sure I am right in front of him and lean down so I am in his front site of view. Again Tam Cummings says they tend to lose some of their peripheral vision. And lastly I always use endearing words and smile as I am taking to him. This took a lot of practice but I do this all the time and it helps. Kind like talking to a little baby, really sweet and understanding tone in my voice. Unfortunately, I think, there are not many paid caregivers who really know how to handle dementia patients. Please go to You Tube and listen to videos from Tam Cummings. They have helped me so much.

BPS

I don't have any experience that would be helpful except in our case there has been several times that medications are added that cause side effects and then those side effects are treated as a new a separate problem so more medication is added instead of going back and trying a different medication for the original issue and the problems grow. It is easier for the doctor to add a go to medication then to go back and review and consider other options.

Daughter of a Marine

https://alzconnected.org/discussion/comment/243728#Comment_243728

Thank you for the suggestion but he would have no clue what to do with a urinal. Can no longer use any type of controller and often does not know how to use the toilet.

Daughter of a Marine

Thank you so much for sharing these thought. Tam Cummings is my best friend! I have watched many of her videos and have learned more from her than anyone else. I so appreciate your reminders and I realize I haven't been approaching him as gently as I should be, and your suggestion about letting him go to bed in his clothes is something I will definitely be implementing. I'm so sorry you are walking this road as well. God bless you.

Daughter of a Marine

Thank you all for taking the time to respond. I'm going to follow up on some of your suggestions - so grateful for this site and for all of you heroes! God bless you!

Dio

I fear only finding the right combination of meds will help. Depakote was added which helped my DH. It's some sort of a mood stabilizer in the brain. Doesn't work for everyone. Good luck!

KathyF1

My husband is also stage 6, and resists changing clothes too. Not as combative though as your husband but we just added Ativan to his Seroquel/ Klonopin. It helps tremendously. He is at home with me and qualified recently for hospice. They are so helpful. They gave me the prescription for Ativan. It may help your husband too!

hiya

My DH takes an extended release Seroquel early afternoon. Maybe it could be an option rather than take so many pill at one time. Good luck.

Daughter of a Marine

https://alzconnected.org/discussion/comment/243728#Comment_243728

Unfortunately he has reached the point where he would have no clue what to do with a urinal. As it is, his toileting has become extremely challenging as he is completely incontinent and uncooperative with getting changed.

Iris L.

There are many medications that have constipation as a side effect. You might search rxlist.com or another drug website for constipation side effects. Also, at this stage, often most medications are withdrawn except for those required for comfort. You can discuss with the doctor.

Iris

SDianeL

Falls are common in late stage dementia. They can’t be prevented. My DH a Marine was in a great VA memory care facility. Late stage 6. He became aggressive when he became incontinent and would lash out at the caregivers when they changed him or tried to give him showers. During this stage he slept a lot. He could not communicate much. He had fallen a couple of times. He couldn’t learn to use a walker. He was already on Risperidone twice a day. They discussed it with me and they said they had no choice but to add Depakote. He then became bedridden and slept except to eat. I talked to the nurse about my feeling that he was overmedicated. They reduced the doses and got him up in a wheelchair and he fell head first out of the chair when he bent over to pick something up off the floor. After the ER visit and stitches he became bedridden again. The nurse explained that he was either asleep or aggressive with nothing in between. They never found a combo that would work for him.

Daughter of a Marine

https://alzconnected.org/discussion/comment/256617#Comment_256617

SDianeL, I have no words to express how sorry I am that you and your love have been through this and especially the fact that no one appears to have anything to offer. I fear this is what we will be facing. He hates showering and is still big and strong enough to launch a caregiver across the room. His body will at some point reflect his debilitated brain but in the meantime, living in limbo is unnerving as we lose him brain cell by brain cell. They have now increased his seroquel to 50mg in the morning and 100 at bedtime to calm his behavior. I'm not convinced these doses will accomplish that. He also takes trazzadone, hydrocodone and melatonin at bedtime and tonight he could hardly walk after getting his bedtime meds. I know another fall is unavoidable. God help us all.

SDianeL

https://alzconnected.org/discussion/comment/256797#Comment_256797

so sorry. Hugs.

Daughter of a Marine

https://alzconnected.org/discussion/comment/243729#Comment_243729

Kat 63, thank you so much for your kind response. I believe I may have watched every video Dr Cummings has created regarding dementia and care giving. I quote her constantly and believe her videos should be part of the training every CNA and memory care staff member receives. I sit next to my DH during meals to help him eat and have noticed that if I'm not conscious of how I approach him with the fork/spoon, he will be startled by that motion. I try to approach him from the front vs the side. I know some very difficult days lie ahead for us and I thank you once again for taking the time to reach out.