I'm troubled by the 2 visits that I had with my wife. The 1st visit was some really small talk for 20 minutes, and then on impulse, I went over to her and hugged her; and then kissed her lightly; she was very responsive; and suddenly,and i realized how much I missed her and I became saddened abruptly and I couldn't stay in her room any longer as I almost broke out crying- but didn't.
My next visit, 3 days later ended quite differently. I put in my usual 15-20 minutes, and as I started to leave. my wife said she was leaving also; I turned to her as I went past the doorway and she grabbed by shirt and started to twist it angrily ; I told her to stop as she was hurting me, and then she said "f..k you" and slammed the door on me.
I found out that she did a similar thing to a caregiver the next day and also pulled the hair of a 2nd caregiver.
My question is about my behavior. perhaps I shouldn't hug or kiss her, because they want me to break the bond with her, and obviously hugging and kissing probably increases the bond instead. Someone told me that when I leave that I shouldn't make an announcement about it but just go, as she will probably forget the I was there.
I'm really not sure what I can "talk" to her about unless it's just mundane topics like the weather,etc.
On one hand, I hesitate to respond because I know there are others in our community here who are very experienced with having spouses in long term care and have had more positive experiences. But then I thought that I would share here to at least let you know my experiences had parallels to yours.
My husband was not in long term care for long (I am combining rehab and alf). He was taking many pharmaceuticals and not raging but was difficult and argumentative. I don't know if I could say we even had conversations. He was verbal but very impatient and angry. Not that I blame him.
Specific to your comments, I did stick to small talk and was very attentive to any signs of anger on his part. He would often ask me to leave. He was adamant about me not observing him being fed and at that time still had an interest in eating so timing my visits to meal service usually worked. If he was escalating or if I just felt I could not take it anymore I would say "let me get you some fresh water". I would leave, ask the attendant to bring him some water and that was that.
Despite all this I still wanted to make physical contact with him. I would ask him if I could hold his hand or kiss him. By kissing I mean on the forehead. He was agreeable because I was asking permission.
Since you mentioned aggressiveness directed toward others as well med modifications may be in order. I think it is very common for meds to be adjusted upon admittance to a facility. In my experience, lorazepam (Ativan) was the go-to.
It is just all so different isn't it. And I think that is largely in part to the type of dementia they have, the symptoms, and then of course, the personality. Whenever I see Dado I hold his hands and kiss his cheeks, and he will sometimes manage to say, "Thank you" He is so receptive to cuddling, as long as I do not touch his rigid hand or get anywhere near his crippled knees.
This subject is so very close to home for me too watchful7, and Abby*. Dado is going to be transferred to a new place in the next month, out of a small home facility to the Va nursing home 75 miles away, a good facility that has 75 patients. I know the staff often say, "DON'T BE AROUND TOO MUCH WHEN THEY ARE FIRST ADMITTED, UNTIL THEY ARE ADJUSTED"
Well, they will have to deal with Nikki the second. Dado NEEDS me and WANTS me and I will be there so much they will think I am a patient.
But this is your thread Watchful7. How I hope things settle in better for all. One thing if I may say, though you likely already know...don't try to figure out the reasons for the behaviors of our spouses. There just seems to be no rhyme or reason. Hang on and verly likely time will improve things. Sending good vibes your way.
Watchful the thing that jumps out at me is this... " perhaps I shouldn't hug or kiss her, because they want me to break the bond with her"
...break the bond with her?? Wow, That seems just absolutely heartless and for the life of me I can't figure out why they would even suggest something so ludicrous. While I have no idea why they would suggest something like that to you, I DO know where I would tell anyone to go who suggested something of that nature to me! He is my husband, why in this last stage, where he needs love and affection so desperately would I just up and abandon him? I am sorry, that makes just no sense at all.
Lynn loves kisses and hugs and it is during these moments of tenderness, like when I am softly caressing him cheek telling him how much I love him that he has the most clearest moments and will often call me by name or know I am his wife.
I would recommend you not listen to that little gem of advice.
As to her anger, I would be angry in their situation too. I couldn't stand to see Lynn suffer so we did include some medication to help with his anxiety and depression while he was transitioning. Perhaps this is something they can do for your dear wife?
Lynn had lost the ability to carry on what society would considers a "meaningful conversation" long before placement. I spend an average of 4 hours a day with him and we fill that time doing activities such as: music shows, reading simple picture books, listening to his favorite music on CD's or I will play the keyboard and sing for him, he loves to tinker on musical instruments, building with his Mega Bloks, taking walks and enjoying nature... and even simple things like not talking at all and just sitting together holding hands. I let him guide where each day will go.
Not all agree, but I have a like mind as Coco.. they need us and they need to feel our touch, to hear words of love. I also strongly believe they need stimulation and that without it they will only sink further and further into their little world. They are still in there and they need tender compassion. Even just our presence is enough. Try not to fret about trying to make conversation, just let her know you are there and that you still care.
It's heartbreaking and so very very difficult. My heart goes out to you ((hugs))
I agree with the others that maybe some stimulation of sorts like a puzzle, a book of family photos, or a simple childs card games if they are able. some activity that's not going to make them stressed out due to an inability not to be able to do it. sometimes we just have to acknowledge the facts as they are and realize our spouses aren't capable of much that would be considered by many meaningful now. just sitting in the sun holding hands may be enjoyable now.rubbing lotion or a light massage may help. I agree with the others that even up to the end, they need our love and physical touch just like babies. my end stage 7 is still able to respond to touch very much enjoys personal contact. especially if they approach in a smiling friendly slow manor. if they don't then that's a cue to find something else that gives them pleasure. I also agree if they are irritable or aggressive then consult the attending physician for a followup on something to help relieve the anxiety better.
The others who have posted are better experts than I am, but I brought in picture books of animals (he likes all animals) and would name them and where they were from. Bring in a book of pictures of something she likes or a hobby she had (knitting, gardening, whatever), coloring books and crayons, I bought a wooden map so he could name the states he's travelled to, a ball to throw gently. If they have an occupational/physical therapy director, perhaps they can give you some suggestions which might keep her interest. Ask the activities director what she responds to when you're not there. Music typically works. When I went to leave I always told him I was going to the bathroom. My leaving became a non-event because somewhere he knew I was coming back the next day.
Go as often as you want to, we're each different and like NIkki, I just couldn't not go. My heart always broke and I sobbed after each visit, mourning what we had lost and were losing. I also agree with checking with the dr to see if s/he recommends something for anxiety. Nothing is easy with this disease.
My DH is in what I call the “Cadillac of wheel chairs”. It looks like a recliner on wheels. He can no longer walk, but he kept trying to stand up in his regular wheel chair & he fell a few times. The aid that takes care of him most of the time knew he needed this wheel chair so she fought “tooth & nail” for him to get it (I LOVE that woman!) I go to visit him almost everyday either at lunch time or dinner time to feed him. I stand in front of his chair so he can see me & most of the time his eyes brighten up & I know that he recognizes me. I ALWAYS kiss him & on the days that he doesn't seem to recognize me..........the kiss does it! Then he will say something like, “Oh you are so beautiful!” He has been in the Veterans Home a year & when he talks he doesn't make much sense so at first I didn't talk to him very much. But now I realize that he needs to hear me talking to him, so I just talk to him as if he could understand what I'm saying. And when he talks I just usually say, “Oh really?” Or if it seems like he is asking me a question I will just respond with whatever I think is appropriate. I also tell him that I love him numerous times a visit & one day after I kissed him a few times one of the aids told us to “get a room!”
I'll add to the chorus of those saying to disregard that particular advice about contact. True, my wife has no behavioral issues ... her issues are all cognitive ... so my situation is different. However, that said, we both look forward to my daily visits when we kiss, cuddle and hold hands for virtually the entire time we are together. We've done this since day one of her admittance 5 weeks ago, and I expect us to continue kissing/hugging/cuddling for as long as this is possible.