So hard to visit him now

Paris20

My husband is about stage 5-6 AD. He had a stroke and is paralyzed on his right side. He is no longer able to be cared for at home. He’s in a skilled nursing facility, where he is well taken care of. The place looks like a country inn. I visit several times a week.

My DH has become increasingly difficult to deal with. He yells at and threatens staff, he refuses  to allow aides to get him cleaned up and ready to start the day. When I visit, I have to work hard to get him to acquiesce. Lately he has refused to take his meds. When I visited this morning, staff told me he had no meds yesterday. Among the many meds and supplements he’s supposed to take are those that help calm him down. Obviously, in the absence of DH’s meds, his many ailments are not treated and his belligerence worsens. And with some of these meds, stopping abruptly can present its own problems.

To add insult to injury, literally, he is having serious trouble holding a conversation. He can’t find the right words and often cannot finish a sentence because by the end of it he has already forgotten the beginning. He cries easily, holds onto my hand for dear life, and has developed significant OCD symptoms. Of course none of this is his fault but I find it more and more difficult to visit. I feel sad and guilty at every visit. I’m having major surgery in mid-January and will be unable to visit him for several weeks so I feel I can’t cut visits out right now. I’m feeling miserable after every visit but I worry what will happen when I’m unable to visit. It’s so conflicting and confusing.

Marie58

Paris, I'm sorry this is so hard. Have they tried crushing his meds and disguising them in pudding or applesauce? (Make sure they are crushable meds as some can't be crushed.)

I get it that it's hard to visit sometimes. But then when we don't visit, that's hard too! I visit my DH who's in MC often because he's late stage 7 and I don't know how long he has. And I love him so much and don't want him being alone so much. But then I get depressed seeing him like this and take a few days off from visiting.  Then I get sad because I miss him. It's a vicious cycle for sure. 

Hope they can get him back on track. 

JoseyWales

Awww Paris, what a tough situation. It's so hard to see our husbands refuse the help that they so desperately need. I have no advice, just know that you're not the only one having a hard time visiting. 

I know where DH is, meds are crushed for several of the residents and put into pudding, apple sauce, chocoloate milk... (Including my DH - he lost the ability to understand how to swallow a pill.) But for others, they're given pills and refusing to take them isn't that uncommon. There's one resident who will even pretend to take them, then hide them. The staff is pretty vigilant about making sure everyone has their meds, and I only occasionally hear about missed meds. It seems that it's something that your husband's staff should be able to figure out.

MaryG123

Might there be a way to minimize the number of pills, like maybe stop the supplements and check with the doc about discontinuing others?  It seems like focusing on meds for behavioral issues might help.

Joydean

Paris I’m so sorry things are so hard. I don’t have any helpful information to offer, I just wanted to let you know I’m praying for you and your dh. You have been through so much my heart goes out to you. Prayers for your upcoming surgery, I hope everything goes well and you have a speedy recovery.

toolbeltexpert

Paris I just want to second what Joydean said and I visit daily and go thru the tears and holding on to me. None of this is easy.

Stewart

Jo C.

How deeply concerning for you and also how tragic for your dear husband who is suffering such dread behaviors along with inability to move his body at will or to communicate, without adequate relief .   Finding the root cause for the behaviors would be a good thing, but sometimes that is elusive and cannot be done accurately due to inability to communicate, etc.

I agree that it is time to have the physician review the meds and supplements your husband is on and discontinue those that are not absolutely necessary.  Some may have to be tapered down rather than stopping cold turkey.  Meds interact with one another sometimes causing highly negative results.  While this can happen soon after starting a med, it can also happen after a longer period of time.  Meds also affect thinking and processing; so couple that with dementia, it is possible that a plethora of meds may be affecting matters even more.

Basically, I would first wonder if he has unresolved pain from any area (especially joints or spine), or from any ongoing condition - that is a big one and often our LO is unable to communicate the pain and at times even unable to process it,  but it is there.  When there is constant unrelieved pain, refusal of care and treatment are often part of the dynamics as is highly negative behavior.   Another question; could he be constipated or perhaps even have one of those "silent" urinary tract infections that have no urinary symptoms but can cause large changes in behavior?  It may be helpful to check those possibilities out as well as discontinuing uneeded meds.

If there are strong delusions driving him and the behaviors there is no way to know that if he cannot communicate.  His clinging and crying when you are present may indicate anxiety and fear, etc., it must be so hard for you to experience that and not be able to have relief for him.

You mention that he is refusing meds including his "calming" meds.  I do not know what sort of calming med he is taking;  however, Ativan can be given as a cream applied to the skin which eliminates the need for cooperation in swallowing the med.  I am not acquainted with what other meds can be applied as a cream when it comes to dementia behavior issues.   If he is calmer, he may then be able to accept care more readily.  It would be good to have a knowledeable healthcare provider do a full body assessment re possibility of pain. 

I so hope that an answer may soon be found that can bring relief to your husband which would also bring relief to you. Please let us know how you and he are doing, we certainly will be thinking of you.

J

Ed1937

Paris, your emotions are understandable. I'm sorry you (and he) are in this situation. Hopefully you'll find that they found a technique to work with him.