I know mine was/is. When my husband had to go to the ER a couple of weeks ago all I kept hearing from the personnel was "do you handle him yourself?" First thing suggested was Hospice. I knew it was coming but didn't think he was THAT bad. He was admitted for a 23 hour admit and every professional that came in to see him had the same comment....."How have you handled him all this time". My answer was you just do what you have to...and they would say he needs Hospice. I have now come to the realization that he cannot continue live like he is. Down to 130 lbs. at 6'2", is not eating or drinking. My eyes are now open to the simple fact that he is dying and that this is a process that I have been dreading for years.
Well, both yes and no. As the 24/7 people, we know better than anyone what their limitations are and what kind of help is needed. The other side of that coin is that we are, sometimes, intimately seeing the trees but possibly missing the forest. Others see the forest as a whole more clearly, but we can tell you exactly where the trails are.
phil-I wish doctors and others would have told me that my dh needed hospice. I figured it out, a bit late, on my own, but probably hampered by that "perspective". Even speaking with close family members, we all wondered and doubted the treatment plan in the subacute/rehab place, but seemed to be frozen in fear to take action. So, I'm so sorry that you have reached this stage in your journey. I hope you have reached out and started the process for hospice either at home or in-patient.
Joan - when I started to read your blog today the first things going through my mind was: go back and read the blogs after your sister was there.
Yes, when you live with something day after day you tend to not see the whole picture. It is like our personal pains - when you live with it day after day you don't think about it until it gets really, really bad. Or you see your grandkids every day then you don't see them for a couple months and they seem to have grown 2 feet!
This is all so true. We are in the thick of it and inch by inch we see the changes yet when asked to list them it is a bit hard to do..If we kept a notebook with us to jot everything down that is a change we would get nothing done. Last night my DH awoke and said his foot hurt..he hates to be questioned so would not answer any questions. Then this morning he could hardly walk on it..and today is the day I had to go to the Social Security office to get my name in the system corrected..that is a long story all it's own...and I thought just what I need now...Had him take off his sock and while things didn't look out of turn, I could not touch his toe without it hurting. He wore a slipper on that foot today and it gave him some relief..but tonight he mentioned it hurt but schrugs it off...I told him we have to pay attention to this as he is diabetic..he said he will be just fine. I said I did not want him to end up like his brother did..he asked what happened and I told him his problem started out with a toe and he ended up losing his leg above the knee and I did not want to see him go through that..and DH was stunned that his brother lost his leg..he did not recall that ordeal and it was terrible.
Dear Phil 4:13 - perhaps you have taken your chosen name here too much to heart. And now maybe that verse means to allow others to help. So sorry this time has come for you but it is coming to all of us here at Joan's place. We aren't that far down the path - at least I don't think so - but know it is where we will end. My thoughts and prayers are with you.
As for the changes with dh - they are most obvious when he tries to do anything mechanical. We tried making doors - no chance in that - now we are just putting the hardware on the doors that his friend completed and hung - big challenge. When we go anyplace in the car he will ask where we are going even tho we've lived in this small town and basically go the same places all the time. Thats the main reason I do all the driving and he never goes any place alone in the car.
mimi it could be a bit of gout as well. its very painful and usually collects in the big toe - my DH suffered many years with it. if it presists i would check it out due to the diabetes and or gout either is troublesome. just a thought as many men get gout due to diet issues and its quite common.
phil, so sorry to hear of this latest declines. hospice will be a huge help.
Mimi, my DH also complains of foot pain. Will keep taking his shoe and sock off and walks with his toes up off the floor. Hospice checked him and it isn't red or swollen. I think he is hypersensitive to pain. He wont let you touch his face. Will say ouch if you get near it.
Thank you for all your support. It is a shock when you realize that your getting close to the end and you aren;t prepared for that.
phil, Hospice for us was wonderful. I can't say enough good things about them. They will help both of you as you complete this journey. Keep your wall up now around your emotions as best you can...you will need it. You have done everything you can. You have taken excellent care of him. DO NOT FEEL ANY GUILT. Just tell him you love him each day.
It is not uncommon for some Alzheimer's patients to have skin so sensitive that any touch causes pain. It is the wires in the mind shortcircuiting the senses, and it makes it very hard for us to care for them when they have the pain of touch.
Yes the gout thing has come to mind as well as concerns for circulation as he is diabetic and the doppler exams show his blood flow below the knee is not great. He lies to me about things too. Guess I'll just have to accidentally bump his foot to get a reaction..my instincts tell me to call for an appt today as the doc is in our local office today..( so many docs now have more than one office location and split days in the county).
Mimi, he might not be lying. They can hurt one minute and not the next. It could be a nerve that is "loose" and sometimes it hurts and sometimes it doesn't.
They get to where they can't remember from one moment to the next. Don't assume he is lying. He may get to where he might not feel at a place where he is bleeding. (mine did) You are still assuming that he can tell you everything, and he might not be able to do so.
Being used to try to "fix" everything that is broken, you automatically ask the questions you did when he was whole. He isn't any more. We all want them well and not hurting, but we have to learn by their movements sometimes rather than what they say. And there may get to be a time when he can't answer you, so learn to judge by his body language. Just try to show some compassion to him while you try to diagnose him without his help! In other words, learn to perform the impossible!
As suggested, I looked back 5 years to see what we were doing. That would be 2006. In that year we took a cruise in Hawaii and a trip to northern Italy. No major trips in 2007, but we took a bus trip to Quebec in 2008. Now she cannot carry on a conversation, do any self care, and is incontinent. She walks with a shuffle and has trouble getting out of a chair. I guess she has really deteriorated in the past 2 years.
Joan, you are not going to lose your mind – where would that leave the rest of us? :) And as far as I can tell, you have perfected your balancing act and deserve a gold medal!
One of my favorite expressions is “Everything’s relative.”
We live day in and day out with our spouse, and adjust to it all. Our best coping mechanism is to normalize the abnormal lives we are living.
When others share their observations, even though it is not “news” to us, we are left to wonder - what’s changed that this person suddenly feels compelled to make that comment?
Last week a close friend said of my DH, “Don’t you think he’s had Alzheimer’s all along? I don’t think he ever had MCI.” That was a shock, but when I thought about, she’s probably right.
Last year, I explained the neuropsych tests to my teenager. I warned him that the tests may not give us answers because intelligent people often do well on them, even if they are having issues. My son responded bluntly, saying, “Dad’s not going to pass the tests, Mom.” That was a shock, too, but I knew he was probably right. And it turned out he was.
When others share their observations, it just reminds us that there is nothing normal about any of this.
I find blogging, or keeping a journal, is invaluable for perspective.
This is really an eye opener! Yesterday I was musing over things and DH had 'miss named' a couple of things in a short conversation but that could be just aging right? He is 72. And now going back five years I can see what a huge change there is. Five years ago he was driving himself to chemo alone! He paid the bills, worked on the ranch equipment welding and such. He took care of maintenance of the cars and purchasing tires and batteries, etc. His memory was sharp and his wit dry or sarcastic. He was continent and very aware of his clothing and appearance. Now he doesn't drive, turned over all of the finanace to me, some incontinence, will wear the same clothing day after day, showers once a week (more if I insist) does not initiate any conversation or interaction. He shuffles when he walks, his feet and hands are always like ice. He has gone from being violent and physically abusive to being very mellow and gentle. I am so grateful for an understanding PCP who prescribed meds early on. I can still leave him alone for a couple of hours but am getting more reluctant to do that. He takes his meds by himself and does his blood sugar and insulin shots with a rare reminder. But there has definately been some really big changes. This thread was a reality bite. Hugs to all of you for sharing information for us 'beginners'. Jan
Got DH to the foot doc and yep he had an irritation that needed a little medicine and a dab again once a month to prevent any possible infection developing because he is at a fairly high risk of getting an infection which then could lead to loosing a toe or two.....
DH has always always always minimilized things to the extent he can end up in troubles. I get sick and tired of his history of brushing things offf just to end up leading to a calamity and even when I take the bull by the horns I get arguements. I told him yesterday I was thinking about giving him a two week notice that I will resign and he needs to interview for someone else to take over this job..he told me I can't quit, who would take as good a care of him as I do. smirk.
My hubby always seems to be banged up! The head gets it when he walks around looking down and bumps his head on everything. The elbows, arms, and hands always have new scabs that turn into scars. We've only had 2 trips to the ER in the last couple months (knock on wood!). We try to be proactive and hide knives, scissors, take the knobs off the stove, and such; but he always seems to find something. About 6 weeks ago he cut his finger to the bone and got 13 stitches. We have searched the entire house and have yet to find what did it. Of course that meant a trip to the ER with family members in tow for the physical restraint part. I just wish when they give him mild sedation they could get back to the task before it starts to wear off. Before the sedation it took 8 people to hold him so they could draw blood. After, it only took 5 to do the stitches. My daughter, DIL, SIL, and I do most of it. He does so much better when we do the restraining and hold him down and talk to him. He has shrunk down to about 5' and 120lbs., but still can put up a helluva fight. They saw all the little wounds on his head and wanted to sedate him further and do a CAT scan. He cannot hold still for anything anymore. I said "no thank you" to more sedation and the CAT scan and had to sign papers saying that I refused. They said he could bump his head and bleed inside his brain because of the blood thinners and die. If his release were only so easy and quick! The myoclonus is responsible for a lot of wounds. He will jerk so hard, he will just fall straight back on his bum and elbows and then the rest of the way down if there is room. He has only nosedived once and ended up with a scrape down the entire side of his face. That on the morning of his family reunion after 2 weeks of nothing. The neurologist has wanted him in a wheelchair for about 10 months now. I'd like to know how you keep a walking person in a wheelchair and convince them that no, they cannot walk. Duh. So I will continue to let him walk because that is all he can do anymore.