Since I've brought John home, I've noticed lots of stuff I hadn't before. Of course his AD has progressed, I know, over the past year+. Surprisingly, he has some VERY lucid, almost normal moments that quickly dissolve. Mostly he sleeps, though, or stares into space. I ask him what he's thinking of . He says, "nothing". This morning when I made him finally get out of bed to the bathroom and down the stairs I noticed something I've not seen before. He uses a walker to get around in the open areas of the house. He wouldn't (couldn't?) walk forward. His feet just took tiny baby steps up and down, like he was marching in place. He used a lot of energy doing this and had to be coached to move each foot FORWARD or he wouldn't get anywhere. Is this a part of a particular stage? As I've mentioned, I'm so active in my questions and voicing my concerns on this message board because I can't get in to see his neurologist until SEPTEMBER! So, I'm bouncing this off of you all. Jen
I have seen this type of behavior in a couple of the residents where my husband is. I can't tell you if it is AD or something else though. Keep in mind that anything the brain controls (i.e., the whole body), can be affected by the disease. As you work with him, you may find that some of this goes away. You may also find that some of this is a side affect of his having been hospitalized/institutionalized (sp?) for so long or even some of his medications. Keep a log of what you observe - that will help you at the neurologist. You might have some sucess with the physical stuff by talking to his primary care physician and seeing if you can get him into physical therapy. Caution on the physical therapy - somewhere I read/heard that Medicare does not pay for physical therapy for people with AD - don't know if there is any truth to that statement but it needs to be asked.
Surely, you ought to see the neurologist before September, especially since it's been so long since his last appt. I always ask that the docs call me when there is a cancellation by someone else...and usually get a call within a few weeks. The scheduling person is rarely aware of urgencies and really doesn't care as much as the nurse or doctor would. Also, a short note to the doctor sent through the mail, marked "personal" asking for an earlier appointment might work. Doctors respect other doctors and you might be able to use that 'card'.
My husband's gait is different..do not expect John to walk forward strides. My husband has no depth perception and will step high over a mortar strip in the tile. My husband seems to step from left to right suffling his feet with each step. His knees are slightly bent and he is bent over at the waist. I worry that he is in a perfect position to fall at any second. He uses a cane and not his walker, -- but the walker is in the room ready to be used at any time.
The walk/gait/depth perception problems are getting worse as months pass.
I was told by his doctor after he broke his hip, not to mention AD to the Physical Therapist, because Medicare would not pay for AD patients therapy - believing they wouldn't remember what they were taught. It's just not fair, is it?
I've had the best luck since I've gotten John home from the hospital since taking him home from the nursing facility.....Physical Therapists come to my home two times a week and......the first thing they told me was that Medicare PAYS FOR IT!!! UNbelievable luck! But, I'm in Virginia and don't know if theres a difference if you live somewhere else. They know he has a dx., too. Just wish John were more cooperative with his treatments. He's only wanted to sleep for the past couple of days and its a fight to get him moving.
I know, I know. Just can't wrap my head around that. Seems like if I could only help him increase his strength, he'd be more balanced, be able to get around better, have a better quality of life. I know so many other men his age, though, through church, farm bureau, that are his age and are still farming, going hunting and fishing....even with their aches and pains. I wonder how much of this is simply lack of physical use or the disease??????? Neurologist appt. in SEPTEMBER. Today, I can't get him up off the couch, since I got him downstairs and out of bed. so, so disappointed in what:......Life? Now, is my lovely family room going to become a "sick room", abounding with the smell of a man that refuses to wash, brush his teeth, wash his hands after the bathroom? ick Think I'm feeling that 'duty' thing here, not True Love anymore.
Stuntgirl, you just described my DH and how he/his room smell! Can't do a thing about it -- just deal with it. Bless your heart, I'm sorry for these rough times but others have given you much good advice, please follow it. Get help to get him placed. I wonder if perhaps during the year he was gone you built up a mental picture of how things would be when he got home that is totally unrealistic. You cannot improve his quality of life, exercise is not going to do anything for him. With his mobility issues, going up and down stairs is not a good idea anyway. Unlike others their age, our DH's don't just have aches and pains, they have DEMENTIA and that is not fixable.
Yes, I think I DID build up a mental picture of how things could be better....for him as well as for me. Now, I just feel lost. I go back and forth with my emotions. Sometimes so empty and 'dutiful'. Then, like right now, just plain confused and resentful. dark. Am I a hateful person? I just don't seem to have the fortitude and love that you all have with your spouses. Ii'm so hungry for companionship, I wanna go looking!!! But, that again, is just wishing. Wouldn't do that.
StuntGirl, you are very vulnerable right now. Please keep the "good" head on your shoulders, and don't do anything foolish right now that you will come to regret. No, you aren't hateful but you must keep your feet on the ground and get through this rough time. Place him as soon as you can and then you can start to get your life back.
My husband also "walks in place". I just tell him that he is stuck in neutral and needs to shift gears. Sometimes it works, most of it time it doesn't. So goes this life.
I hate to say it but I think most of us are all thinking the same thing. He definitely belongs in a nursing home. You should never even consider keeping him at home. You're expecting too much of him and it "aint gonna happen"
Physical Therapy does help to rebuild muscle tissue in a person with AD, it can improve their ability to move around. My DW has been receiving PT at the NF since she has been there. When she went in she could barely stand by herself, now she is able to walk 50 or 100 feet, so it does help them.
Seriously Stuntgirl, you should begin to look for a nursing facility and into the requirements for getting him into a NF. You have undertaken a huge responsibility trying to care for your husband at home, I tried this at home for several weeks after they told me my wife needed 24/7 care. It would have taken three shifts of two people to keep her out of danger. My daughter an I were physically and mentally exhausted by the end of the first week.
My biggest thought here, then, is that the news of his going into a facility will break his heart and (to him) confirm that I don't want him anymore and all his "boyfriend" stories are true.
Darling Jen, he really doesn't understand anything. Our DH's walk, talk, and sometime look the same, but they are not. Let those who understand his current stage of mental health decide for your...and then trust them to do what is best for the two of you...You can tell him it's just until he gets well. Concept of time?? My DH has none. A week - a day - it is all the same to him. Find someone who can make the decision for you and let them. He is going to hurt you or himself, critically. That's everyone's worst fear here on this site..and then WHO will take care of your farm, your husband, your cat, your garden??? He is mentally ill. If he had a gaping wound in his leg that was infected and/or bleeding, would you still hesitate to take him to a facility that would be able to care for him and stop the pain? That's the horror of mental health, no spots, no swelling, no fever. But they are every bit as sick as if they did have those outward "spots". I just wish you'd be able to stand back and see the entire picture more clearly.
first of all, you don't tell him ahead. You just take a drive and end up there. Second, every time he talks about the boyfriends, it destroys you, and you can't deal with himi physically. if he's in a facility at least you'll be safe. HEAR what Nancy just told you. PLEAAAAASSSEEEE!
Jen, you can do this in stages, first take a baby step by getting him some physical therapy in a NF/Rehab facility, then they can move on to some medical observation and so on. In a couple of weeks he will probably be well adjusted. Since moving into the NF, my DW has ceased talking about my affairs, has stopped worrying about who is coming to see her, her back pain is gone. She seems happy. I stopped by to visit yesterday afternoon and visited with her for a while, she became more interested in the black and white John Wayne movie on the TV in the Community Room than visiting with me. This is very strange because she always hated black & white movies and refused to watch them at home. Go figure!
Placing John in a facility is going to make life easier for you and will allow you to devote the time you need to pursue your business and other interests.
I have told my husband that he is going to go live somewhere else where there are lots of people to help take care of him but I have not mentioned it again and since he can't talk I don't know what he thinks about it. I will remind him again the day we are on the way there.
We (John and I) talk about this often, ehamilton.....I know he wants to stay home, but he zones out so much sometimes, I wonder if he even understands. He often appologizes for not being the man I married. I never really know what is going on in his head. Some days unresponsive or abusive, some days (like today) are sweet and eager to please, even though it is too hard, physically. I just don't get it.