I feel better than when last here but have this heightened sense of anxiety and just do not feel well. All my tests come out fine. There is apparently no physical reason why I feel this way.
Mim, I've been following you and your cancer. How awful it must to be to be dealing with two such horrific diseases at the same time.
The night my husband was brought to the nursing home I was hysterical. I simply couldn't believe he would be spending the rest of his life in a home. But, there was also relief that I didn't have to deal with all the problems dementia brings at home anymore. After about a year or more, I became more used to him being there; that's why I don't know why I seem to be at wits end now. I go,every other day. Today I was there but he didn't know who I was. There was no real interaction.
In all these years, I never even said "I wish things were different." I accepted the diagnosis, thinking, ok, we've had pretty good health all these years, why shouldn't something like this happen? But now, I think of what our life could have been like and I want it so badly. I also think about him as he used to be and want him back. This is what I'm trying to understand, why are my feelings so different now? After all these years, I'm missing my real husband more and more and maybe that's why I'm finding it so difficult to continue. The thought just entered my head as I'm typing this.
Cassie, I will find the strength. I know it's inside me. Everyone I know keeps telling me how strong I am, I just have to find even more than I've had before.
My DH has been in long term care for three years this month. I cried a lot when he first went there then I seemed to settle down a it but for the last few months I have been like you. I cry my heart out for the man I had not this one. I want the life we had back and I have trouble accepting that it will never be again. Every now and then I see that man again and then I think I have him back then he does or says something that yanks me back to reality but I still wish I could have him back. I guess that is what this disease does to us. You visit your man and he doesn't know you. I visit mine and he knows me but can be either sweet loving as he was or bossy, nasty arrogant and distant. I never know who I will be visiting or taking out. He plays games with me but I have to realize that he has no idea what these games do to me. I cry all the way home. Can we just walk away and close our hearts and minds to them? Not me. I vowed "Till death".
My husband (formerly known as the energizer bunny) has been having trouble walking. He fell twice this week, once last weekend when he was with our health aide and again last night when he was with me. Both times, he lost his balance and slid down the wall and landed on his butt, although yesterday he hit the back of his head on a metal cabinet. Last night, he was holding my hand but he grabbed a table on wheels with his other hand and it rolled. He was not wearing shoes but instead was wearing slipper socks with gripper things on them. The aide assigned to him told me he was not wearing shoes when she got there at 3 and when she tried to put his shoes on, he indicated that his feet hurt. This has happened several times. Also, his feet and ankles have still been slightly swollen since the Depakote incident in April.
After I came home I started looking at the internet and arrived at a diagnosis: peripheral vascular disease. Based on the symptoms I think he has had this for a long time - since well before he was admitted. (It may be on the records that were sent from his PCP when he was admitted. I knew he had some sort of vascular issue with his legs but I did not know what it was called.) I called the unit nurse and she said this condition was not on his chart but she would have the doctor look at him on Monday. She said she would ask the doctor if there is something we could do to alleviate the foot pain so he could wear shoes or if I should buy different shoes. The nurse said did not even realize that he had not been wearing shoes. She said that she did not think that lack of shoes was the cause since the fall was caused by the rolling table. (This statement infuriated me but I bit my tongue.)
P.S. I am extremely upset by this, partly because I start to lose it when my faith in medical personnel at the LTC is shaken. I have absolutely no medical training and I don't think I should have to go on the internet to figure out what conditions my husband might be suffering from.
I just lost a long reply to your post, so here is a condensed version: So sorry. Stupid remark by nurse. You've on right track. Slipper socks are a menace (bare feet would be safer, based on my experience with a broken pelvis 2 yrs. ago). Get most comfortable and stable shoes available. Is it time for a walker? Sending you love and best wishes.
If he already has a diagnosis of peripheral vascular disease, could support stockings help the pain in his feet? They are a nuisance to put on, but there are tricks. Sockwell are the roomiest in the toes and are the most comfortable. If he wears a men's medium, go up to a medium-large.
Myrtle, I have two things to suggest in addition to discovering the problem. I agree with Mary to try shoes that fit well. If feet swell, foot size is different and can be uncomfortable. My other suggest suggestion, if your husband is not on a pain regimen you talk with his physician about trying one. In my partner's case it is amazing what a little scheduled tylenol can do, taken before discomfort becomes overwhelming.
Myrtle, Lindylou's advice about scheduled pain control is a very good one. If you decide to keep your husband in shoes, does he have, or have you looked at the shoes especially made for people with vascular foot issues, like diabetes? I think they are called Drew. Women's shoes (different brand) also have a stretchy mesh that would work if they were made for men. An orthopedic shoe store might be a big help in figuring out what he could wear, even if you decide on slippers.
Thanks for all the good advice. My husband has been wearing compression stockings for at least 20 years. I remember measuring his legs and ankles to order them from a catalog. He has the most delicate ankles and beautiful legs and maybe that is why the LTC folks do not think they are still swollen. The ones he wore at home were heavy tight black things and he wore a regular sock over them but when he was admitted to the LTC, they switched him to light-weight white ones that do not seem to be as tight and that have a hole in the toe. They said he did not need to wear socks over them so I gave his socks away to another resident. The slipper socks they have there do provide traction but no support. He does not stand up in a shower; they have a special shower chair that he sits in and it moves on a track. I need to check on what the doctor said and after that I'll investigate the idea of pain drugs and shoes made for people with vascular issues. If I cannot make progress this afternoon, I'll make an appointment with the Director of Nursing.
So here is my rant: I am so sick of trying to figure out these medical issues by myself. My husband is in a 300-bed medical facility that has MDs, RNs, LPNs, CNAs, PTs, OTs, etc., as well as an outpatient department with several specialties. And I'm supposed to figure this stuff out? With no medical education or training? As you can tell, I am really POed. Part of this is because I had a bad cold last week that has left me with violent coughing. (I caught it at the LTC facility but my neighbors say they and their coworkers have it, too, so I guess it is everywhere.) My husband now has it but was well enough yesterday to go to the Trustees Picnic and he enjoyed the dog & burgers, beans, potato salad and ice cream, as well as the beautiful sunny autumn weather. The Trustees dished up the food at the serving table and as I went through the line, I was tempted to ask them to recommend the appropriate foot wear on the theory that, as fiduciaries of a large medical facility, they must know more than I do. But I restrained myself.
Myrtle, you're right, it is the stability that's missing when wearing a slipper sock: the foot needs more supported from a solid base. I like Marche*'s idea of the Drew diabetic shoe. (I googled them, and I've have seen people wearing similar ones after foot surgery.) Agree entirely with your last paragraph. Frustrating to the nth degree. I've found that there is always someone (usually at the top) who does care, who will be helpful. The trick is to find them. Sometimes it is the patient's own doctor, the one he had before he was in the care facility. Some larger hospitals have a patient's advocate. Maybe it might be the occupational therapist at the facility. (Even then, you might have to use your own common sense, or call in a male friend, who is an engineer or welder. I'm not joking — you need someone who is practical and knows how to solve problems. I could fill pages with my own rants of the "fluffing off" and downright ignorance by supposedly qualified professionals. If Nikki (Niki?) is reading this, she's a number-one solver of this kind of problem and a force to be reckoned with. She has posted recently, and you could read her posts this way. She never took "no" for an answer and came up with some innovative ways to get what was needed for her husband Lynn. In the meantime, hope your cold is better soon.
I just talked to the nurse, who said the doctor did look at my husband's feet on Monday but said nothing, ordered nothing, and left no message answering the questions I had left for him. She suggested that since the CNA thought his sneakers might be too tight, I should buy a larger pair of sneakers. If that doesn't work, I can try something else. So I guess I am on my own with diagnosing this problem. I'm going to see if there is another pair of shoes in his closet that I can try out.
Yes, I guess you are on your own, as far as the doctor(is that the staff doctor?) and nurse and CNA are concerned. They are being as helpful as a rubber crutch. It is flicking frustrating. I once hired an occupational therapist, and then I had my welder son modify her solution so that it worked. Common, practical sense seems to be in short supply these days.
Myrtle, I came across this correspondence re.a car prang and thought of you.
"As things stand at the moment I'm not taking any action, legal or otherwise, as I don't really see how any such action would help speed things up. It's difficult to know who to lay the blame on anyway. They all seem pretty inefficient in their own areas of expertise."
Walking: I bought some new sneakers for my husband - same length but wider, as suggested by aides. He seems to really like them but they have not helped his walking. After weeks of my complaining about this, he apparently stopped walking entirely early this week - refused to take even one step - and all of a sudden everyone there seemed to mobilize. The doctor ordered labs (don't know for what) and asked for an evaluation by physical therapy. The doctor's sense was that this inability/refusal to walk is dementia-related. My husband had a big day on Wednesday (will explain below) and on Thursday morning he surprised everyone by waking up two hours early and walking out to the day room looking for breakfast. Then the next day he was not walking again. I have been overwhelmed this week and am just getting back into this. Need to find out about lab results
Visit: My husband's daughter and granddaughter came from out west to visit him this week. We went over there early Wednesday afternoon and wheeled him out to a scenic overlook. It was a gorgeous day and the visit was outstanding. He had not seen his daughter for 5 years and his granddaughter - now 32 - for many more years than that. I don't know if he knew who they were but I think he sense they were his family, since he interacted with them both the whole time, smiling and babbling, and held his granddaughter's hand. We were there all afternoon - more than 3½ hours - and he was animated and happy the entire time. The next day was the day he woke up early and walked out of his room on his own steam. Later, I brought his granddaughter back there (her mother's plane left earlier) and she had another visit with him, which was nice but not as spectacular. I was pleased that it went so well and that he had a good time. Will post more about this elsewhere.
I finally got around to calling the director of nursing to ask what the xxxx was going on with my husband and what they were doing about it. It turns out that the doctor did a bunch of basic lab tests to see if there was something systemic but the results were fine. The doc asked physical therapy to evaluate him, which they did, and found that he is able to walk using a walker but someone has to guide him because he is too confused to know what a walker is for. So they think that he is physically able to walk but is afraid to and that this fear is dementia-based. That's what I think, too. He is now getting P.T., using the walker. I told the director of nursing that although I am satisfied with the care he is getting, their communication process stinks. I think that part of the problem is that they are short-staffed so the unit nurse does not have time to look at a patient's records in order to answer the family's questions.
I was laid low by a sinus infection so I did not go to see my husband for 3 days, from Friday to Tuesday (although our home health aide visited him on Saturday). When I went in yesterday, he seemed to see me but did not acknowledge me even when I sat next to him and held his hand. I thought he was in one of his "fake catatonic" states until a nurse or an aide went by and he started to babble or make funny sounds to get their attention, and then responded when they talked to him or hugged him. I took him to a musical performance upstairs and although he clapped along with the rhythm and applauded after each piece, he acted as though I was not there. When I brought him back to the dementia unit, I moved him to a recliner and he briefly feel asleep and it was not until he woke up that he acknowledged my presence by making funny little sounds. So now I realize he does have some sense of time and of my presence. I will not stay away for that long again.
Myrtle, I found that with my husband too. Although he does not seem to be aware of my presence when I'm there everyday, if I miss a couple of days or more, he does not warm up to me for a while. Leaves me questioning if he recognizes me as his wife or as someone who comes regularly to visit. Hmm!
My husband is not able to go out for a few week because of his eye surgery and so yesterday I went visit him. He was not very talkative with me but he went to get an coffee at the coffee shop and I could hear him having a great time. When he came back to me he just went back to sort if bored with me. He talks much more to me if I take him to MacDonalds but not if I go there or when he was coming to my house.
My husband has not been able to talk for some time, except for gibberish and he seems not to understand much. In the last few months, he has stopped walking, except with the help of aides who walk him in the morning and also walk him to and from meals. This is probably the most profound physical change in his life, for he was always a man who moved, not frenetically but casually and easily, and not a man who sat in chairs. In fact, he did not understand how other men could sit around. (He used to say that the reclining chair was responsible for the breakdown of the American family because men sat in them all the time instead of helping their wives and doing things with their children!) Now he sits in a recliner for most of the day. He has not been able to eat by himself for a few months and in the last week, he has started "pocketing" his food in his cheeks. The nurse said they may have to start getting it ground up. Today the supper was a Shepard's pie type of thing which he did not really need to chew. His eyes were closed and he would not open his mouth until I told him to. He seems to be trying to block out the world. This dramatic decline sounds like what others have described before their spouses died, but I know it can last for a long time.
There are 25 men there and only five of them (my husband and four others) are the same people who were there when my husband was admitted 2½ years ago. All the others have died. The morning after Thanksgiving, the staff found that one of the residents had died in his sleep. His disease was nowhere as advanced as my husband's is. All I could think was, "Way to go."
You don't have to respond to this post. I know you understand all of it and sympathize. I just had to tell someone else so I would have to admit to myself that it was real and could not pretend it was not happening.
My DH has gone through the same things. Most of the residents who were there when he went there are gone. As with your DH's group, they were not advanced but just had other health problems that took them. We are now finding that DH is needing to sleep most mornings and afternoons as well. They are concerned that he is getting depressed. He worries about me and my place and everything in general. They may have to change some meds this week. I'm not taking him out as much and that may be a problem but taking him out may be a problem as well. Catch 22? Likely! This disease is so unpredictable. One day something works the next it doesn't. We are all on the dementia merry-go-round.
My DH has to be checked during the night to make sure he is sleeping and he tells me they come in and he pretends to be sleeping. He says it's none of their business if he is sleeping or not. I think your right about "blocking the world out". Maybe it is just to much for them to deal with.
Jazzy, pretty snappy reply from your husband, "it's none of their business." He sounds like someone who has been in command in his working life. Couldn't help but smile.
You hit the nail in the head mary75. He was a senior non-commissioned officer in the Royal Canadian Air Force for nearly 30 years. Snappy is right. He runs the LTC with an iron fist. He maintains order and makes sure the rules are followed. I find it quite the thing as the upper staff love it. Regular staff have come to enjoy his rule. They tell me he us an inspiration I call it over bearing and bossy. It works for them.
My wife has been sleeping very late. Meds are one issue and reducing Trazadone from 200mg to 100mg helped, but they had to increase it back up to 125mg due to behavior issues. Staff checks on her around 6am to see if she is wet (she is) and she complains that it takes her a long time to fall back asleep, but we can't trust her self-reporting. Her 3 hours might be 10 minutes. So the ALF will try not waking her up and let her be wet and see if she wakes up earlier. They will also monitor that she doesn't develop problems from being in a wet diaper for a longer time.
On Saturday the nurse mentioned that she tried getting my wife up twice without success (this was at 11:30am). When I entered the room she was in bed but awake. It took around 5 minutes before she tried getting up. I think this is a sign of loss of executive function, that she is losing the initiative to get out of bed.
My hubby is now going to bed at 20:30 and getting up at 08:30. He getting distant with me and getting more comfortable there. That's what he says but he also says he is awake for a long time at night. I have had to stop worrying about it or I will go nuts. One week with no visits or outings has been hard but it is what he wants. You never know what will come next.
I signed my husband up for hospice yesterday. He has stopped walking, sleeps a lot, eats very little of his pureed food and has lost 10 lbs. in a month. On the other hand, he is still cheerful and interacts with me, the staff and sometimes the other residents. So I have asked that he remain in the dementia unit for now. He can be moved to the hospice unit when he no longer benefits from this socialization. Hospice has already made some changes to increase his comfort. A hospice nurse will come in twice a week and an aide will come in three times a week to give him extra personal care and if possible take him out of the unit in a wheelchair. This will take a little of the pressure off me.
Sometimes I realize that I am acting like this whole thing is dream and then I have to sign some papers and it hits me that it is real. How could our lives have come to this point? As I told the hospice nurse, when I married a man 19 years my senior, I did not expect that he would outlive me but neither did I think we would lose a decade to this disease. I know that some people may find a higher meaning in what has happened but to me it is a train wreck.
Dearest Myrtle, I am sorry that your husband has declined. You are doing a magnificent job in your care of him. I hope that you will find some comfort in knowing that. You are both in my thoughts and prayers and will remain there.
Myrtle, the care that you have put in place sounds like perfect timing to me. As always, you have done well. I can't see any higher meaning either just a tragic train wreck to me too!
I selected this "discussion" as it seemed the best fit for my question. Is there anyone out there that does not visit their loved on? I see that there is a lot of opinion on what's enough, how often, everyone is different, etc. My husband is now in his 4th year of placement, his 4th year began this past New Year's Eve. I saw him six months ago and upon leaving the facility went home to pretty much end my own life because I could not take "it" anymore. I have to say that not going to see him has saved me from myself. However, there is still the daily angst, guilt, loneliness, depression, and all the thousand other emotions I deal with every waking moment. I still have to work, that was part of the problem of keeping him at home. It just did not bode well and as many times happens, a catastrophe precipitated his placement. To preface my question, I feel there needs to be some detail on what lead up to the ultimate placement. Seven years ago, around my 50th Birthday, I knew that there was something horribly wrong with my husband, could even go back a few years from that, so literally the Alzheimer's demon has possessed "us" for 7 plus years. So much so that the usual destruction of relationship, loss of family, loss of hobbies and shared interests, total loss, complete total loss of life as we knew it when the Alzheimer's bomb exploded our life into complete shards of nothingness, never to be recovered. Holiday's, birthdays, special occasions became non-existent. As my husband disappeared so did I. I continue to work as when the music stopped I was the last "man" standing, so it's all on me now. I go to work in robot mode, as I go through most of my waking hours. Around Thanksgiving of the year that he was placed, there was a catastrophic event that cemented my resolve to place him. He agreed as best as he could through the fog of his world, lucky us, he was cooperative. There really is no room for the word luck in our world, kind of like saying those that survived the concentration camps were "lucky". His two daughters and I had reviewed and selected a fabulous place to place him when the time came, again, we lucked out by finding such a wonderful facility. I called the administrator around Thanksgiving and told her to get the process started that it was time, so the doctors, insurance, pharmacy, power of attorney, all of the stuff that goes along with placement was started. We did have all our legal documents in place which is imperative to have done, imperative, mandatory, it has to be done or you will be spinning your wheels and won't be able to fight your way out of a wet paper bag. So, that got the placement gear in motion and mid -December I got the call that it would be in the end of December that we could move him in. Okay. His daughters and I, and he, spent the day getting his room set up, took his favorite dog in for a visit and that helped, it went smoothly - so to speak. I turned 50 and started having stress related medical issues, but I had to care for him, I didn't count and now those issues are serious and I don't care to have them addressed because what is left of my life is no life at all. I used to be a very healthy, vibrant, attractive fun person. Now, over the years I have developed an alcohol problem, that helps me with the debilitating panic attacks that I developed and also helps me sleep, as I would go for days without sleep when he was home, we all know the drill, no sleep with an Alzheimer's visitor in the next room. So, the weight gain, the appearance change, not keeping up with myself, pretty much the truth is the Alzheimer's sufferer will outlive the spouse. It got so serious that six months ago, the last time I went to visit him, I left the facility and went home and searched for where I had hidden the guns. I could not live anymore with the sight of my wonderful husband being destroyed by this disease. Obviously, I didn't do it but I decided to try something. My Sophie's Choice, I call most of my decisions "one of my Sophie's Choice" decisions. I decided to try not seeing him at all. It was difficult, but slowly as each day went by that I didn't have to go see him, I found that I had room in my mind for things that I would like to start having back in my life.
My apologies for the lengthy previous "comment", it all comes out when my fingers hit the keyboard. I have to add a few things. When I would get ready to go see my husband, usually after work or on the weekends around mealtimes, I would get a physical reaction before leaving the house. This got so bad that I would literally end up in the bathroom, unable to leave the house. My body started having "physical" reactions to the stress, all it would take would be my cell phone buzzing and I would see the number from the facility and that would send me running for the bathroom. This did not work out well while I was at work. So, I started just leaving my phone off. My oldest step daughter has taken over medical power of attorney so that has also alleviated some of my stress. I was missing so much work that my job was in jeopardy. I could not handle this situation any longer. So, the placement and ultimate decision for me to turn over his affairs to his daughter and not visit him any longer has opened up a small window of a new life for me. Is it selfish? Yes, it is selfish to want to survive I suppose. Being human also means not being able to do everything, I had to walk away and almost walked away by killing myself. I had never experienced such an "event" in my life that made me want to commit suicide, this Alzheimer's curse brought that option clearly to me as an option of making it all go away. I honestly cannot see myself going to see him again. What would it do for either one of us. He doesn't know, but I do and I don't want to loose all of the small strides I have made just to make it look good that I go see my husband. What other people think has long not been of any concern to me. I am heading in on 60 years old, so I don't have much time left to enjoy the ride so to speak. I better start doing so each and every day.
I think you've done the right thing. It works. I'm sorry you've had such a rough ride. Wish I had more to offer, but I am not well right now. Love to you and prayers.
One size doesn't fit all. There is no right or wrong no best practice for everyone.
We need to do what we need to do to survive and live our life.
Don't feel guilty with your choices we all have tried to do the best we can nobody else is walking in our shoes.
So ladylimbo sounds like you have recognized what you need to do for you. Good luck you are young you still have a lot of life ahead of you. It is all about attitude enjoy the ride everyday you deserve it.
I went past my own limits and that's when I placed my wife. I felt like I was coming apart. I also wrestled with the idea of suicide. We don't need to explain but I think it does our heart good when we do explain to people who 'know'.
You made a Sophie's choice to survive. It's a Sophie's choice because whatever choices you make the train wreck happens anyways. Seven years is a long time in this as most of us know.
The human mind is so twisted around, that the word we mostly use about ourselves is selfish, which should just mean pertaining to the self, but it means thinking about yourself makes you a bad person which is sick when you stop and think about it. "Know thyself" the new testament says Jesus said. That makes sense because how are you going to steer your soul through life with a blindfold on about the main character?
You have a job to survive and you have his daughter on board. The evidence that the limits are real are like red lights flashing in your posts.
On this battlefield we defeat no one. We endure until we lose this war. My advice is forget about resolution of anything within yourself - instead remind yourself of where the bombs go off; which is why you made the hard choice to no longer stand there.
This battle for you isn't about making this choice. You've made it. I agree with you completely. You could consider throwing your own survival away for style points, but you know, I wouldn't.
The choice is hard enough but it's just the opener. Living with our own conflicts and yearning for justification (that's a natural and constant state of human existence) - is always on the back burner at least and in things this powerful can be a white hot furnace. That's how my own guilt was at first about my own choice but that case was heard and the defendant was found not guilty of anything important. The compensation paid is that I know and accept that I did what I had to do.
Ladylimbo I don't peek in here very often anymore. Something brought me here today. I, too, had a very long ride through the tunnel before I saw the headlights of an oncoming train. Catastrophic violence and a Baker Act ended in my husband's placement. One of four as he was an escape artist. I forced myself to visit twice a week just to assure he was being well cared for. Some of the lunch ladies looked down at me because they were there to feed every meal. My husband didn't know or miss me. I lived with the disease for at least 20 years and love was long gone. It's almost seven years now and I'm Still trying to pick up the pieces. The #$%& disease shouldn't have to take two lives.
ladylimbo I am like bluedaze* in that I don't regularly come to this thread. Too painful since my husband died in March.
Something told me to come here today. I truly feel for you and believe you have made the best possible choice for you. And good on you for recognizing what you need to do for self preservation.
I can totally relate in that I made choices shunned by others including family, friends, and health care professionals. I lost all my good friends because of these. And I regularly have PTSD flashbacks to many unpleasant interactions and encounters.
It is a really long story and like you, I made choices that seem to fly in the face of what society expects a "good spouse" to do. I also struggled with much self doubt on one hand knowing I needed to do some things to maintain sanity and at the same time feeling shame I was not a good wife.
The bottom line is I fully lost myself to my husband's disease. Even know I did not keep up with society and the residential staff expected of me I did maintain a strong advocacy role. That was exhausting as my husband was in three different facilities due to his aggression. Sprinkled in there were lots of acute care hospital admissions. I had to spend SO much time getting to know yet again another health care team. And start all over with them. Like you as well I came to hate the phone. Another notification of hitting another resident or staff, another notice of...bla bla bla...on and on it went.
Eight years ago I was fit, ran great distances, a good weight, and people used to say they wish they had 1/2 my energy. Through loosing myself to my husband's disease I am a completely different person having lost all of that vitality. I truly understand the attraction of suicide. I told my counsellor many times "the best way out of this is to just die."
After my husband died, I managed the next month doing all the post death work. One Thursday I attended the last post death lawyer's appointment and Friday morning woke up with severe body pain. That was 9 months ago and the thinking is this is all due to my body's reaction to all the years of stress and trauma. Some days I can barely manage to walk around.
My focus now has become self care so I don't die soon. Thus yoga, meditation, writing, and painting. Those have just started this month as for the last 9 months I have simply survived. I can not believe how incredibly exhausted the caregiving journey is.
So I am sending you much support to do exactly as you have and to trust your inner wise counsel. Thank you for reaching out to us and letting us share with you. Keep in touch as we are all here for each other.
Last week I was speaking to a nurse at the local nursing home and she said (in reply to my query) that the ratio of nurse to patient is supposed to be 1 to 5 but in reality it is usually 1 to 6 (and it is the same for the dementia unit) .That is here in Australia so I was wondering how that compares with USA and Canada?
I don't know cassie. I looked around and saw some comments about ratios on nursing sites but it's always different from 4 to 8 was what I saw in a brief search.
Don't know the ratio but just a comment I think it is a bit more complicated than that. I guess the facility where Lisa is changed their service delivery model a few months prior to her going in. Apparently they were having issues. They decreased the number of nurses and increased the number of aides. To me this didn't sound good but really it was. The result was more boots on the ground. Nurses have a role to play but depending on the nurse things like getting them dressed ready for the day etc etc. Some of them will do and some not,not part of their job description. they are there primarily to deal with things like medication.
So the result was more individual attention. Example many times when Lisa has been upset there will be an aide just sitting with her talking. When I picked her up to take her for Christmas dinner one of the aides had done her hair got her dressed really nicely etc. At times they will do her nails. They take her around with them getting her to do little jobs that she can handle or even take her out for a walk. To me this seems more important than the number of nurses.
Once again, coming to the site and not knowing really if this is the appropriate topic to rant on about my latest dilemma. As katherinecs states above and I feel the same is that I really have lost myself to this disease and going away permanently seems like an option that makes the most sense. I also used to be extremely healthy, fit, well rounded in every aspect of my life, good job, great hobbies, just a really full life, enviable to many. No, I was not then or now rich, so money isn't a factor in my happiness. Working and money is a factor in surviving and there is never enough when you have an Alzheimer's spouse. Retirement gone, any savings gone, so at least I don't have to worry about the stock market crashing, I don't have anything invested... one less thing to worry myself over...
Here I sit today, looking at yet another letter from the imaging office that is telling me I am 4 years past due on my yearly mammogram. The last one I had there was the exact week that my husband was diagnosed with EOAD. I had a panic attack (my first of many to come) and left without finishing the appointment. Well, in the ensuing years I didn't go to the doctor, for anything, no dental work, nothing. Got a case of the shingles on my forehead very close to my eye, didn't go to the doctor. There was no longer a me, no haircuts, nothing. But, my husband got all of his medical appointments on time, regular hair cuts, regular dental work - gotta keep the teeth healthy so he stays healthy, what a mind F#*&^*&^k. The doctor threw a fit when I didn't keep him on the cholesterol meds, said he needs to keep his heart healthy! Another dismal Sophie's choice scenario with the inept medical profession, they are really clueless.
Well, now here I stare at the letter. Okay, if I do make the appointment and go, without having a panic attack, what if they find something? I know I won't follow up, I have no desire to fight cancer, you have to have a desire to live, a very strong desire to go up against cancer - I know this as I watched my mom die from breast cancer in her early 50's, and she fought like a crazy woman to beat the disease, she lost. I have nothing left in my life or future that would give me the drive to live, for what? Being alone for the rest of my life while my husband is slowly disintegrating in the memory care facility? I really think it's just better to let what is going to happen, happen, we have to die sometime, there's no way out of it. Then the circular firing squad conversation: I work, have health insurance and limited time off from work, cancer is very time consuming, won't be able to work, lose my health insurance then cannot continue with any sort of treatment, no work, no make house payment, no insurance, you cannot win. Again, I was the last one standing when the music stopped and have been completely on my own ever since...
Casie, In my husband's unit there are supposed to be 2 nurses and 4 aides for 25 residents. But often there is only 1 nurse in the evening, who has to do all the meds, diabetes care and wound care. That is often too much work for one person and I have seen nurses who have missed their supper break or had to delay it for hours. If an aide is missing, it also causes problems especially when the residents have to be readied to go to bed. They need more staff.
ladylimbo. It is important to figure out which medical stuff to skip for your husband. Teeth are important to comfort. Statins are lower in the list unless there is a more immediate danger. If you doctor wants the statins so you husband won't die of a heart attack 20 years from now, skip it. Also look at the costs of the statins, there are high cost and low cost once with no evidence that the high cost ones work any better. And you can always tell the doctor that your husband is more likely to die from dementia than from heart problems.
I stopped having my wife seeing a thyroid specialist because the stress on he didn't seem worth it. She had a thicket strand in her thyroid, had it removed, and the biopsy showed no problems. Yet the doctor insisted on seeing her every 12 months. The last visit led to a blood test which involved a physical altercation (the testing facility agreed to not press charges if my wife never returned). While people do die of thyroid cancer, the odds of her having it are tiny and in most cases thyroid cancer does not metatisise and theater one's life.
ladylimbo, Just get the mammogram. Your reasons for not having it done are based on unwarranted factual assumptions. First, you are assuming that the mammogram will show that you have cancer. You are also assuming that in order to recover from cancer, you would need aggressive treatment, which would require a strong desire to "fight" the cancer, as your mother did. Third, you're assuming that cancer treatment is always time-consuming and requires you stop working. These assumptions are not always true.
I know this because one year after my husband was diagnosed with AD, I was diagnosed with breast cancer. Because of the shock of my husband's AD diagnosis, I did not have a strong desire to survive, although I did not want to die, either. Rather than get into battle mode to "fight" the cancer, I simply got the treatment that was recommended -- which turned out to be a lumpectomy and radiation. (A genome test of the tumor showed I did not need chemo.) I was the main breadwinner and was able to continue working, to make mortgage payments, and to take care of my husband, who was still at home then.
You are suffering emotionally from your Alzheimer's experience. I am worried that this suffering is affecting your ability to think clearly and will cause you to make some bad choices. Chances are the mammogram will turn out fine. If it doesn't, you can make any treatment decisions then. Let us know what happens. We are here for you.
Hi Paulc, totally agree, comfort and monitoring for pain, fever, UTI's (which we all know after 20 minutes of living in Alzheimer's land is a culprit in behavior changes). After the last go-round with the doctor's office I took my husband off treatment from his medical group and placed him in the facility doctor/NP/nurse/aide staff. It's so much better, the medical personnel are in tune with this patient population and actually they see my husband much more than the regular doctor did, typically on a two to three times a week basis even just to take blood pressures, etc... The last straw with the outside family doctor was one weekend my husband went behavior ballistic (he's usually very calm quiet reserved). The staff went down the checklist and thought it would be a good idea to take a urine sample for screen - UTI. They had to call the doctor's office to get a verbal ok in order to order a UTI sample. The doctor that ended up calling back said he didn't agree with a urine sample being ordered as my husband is "way to young and in good health" to have a UTI. What? Excuse me? We were not asking for an MRI or OxyContin, just pee in a jar and zip it through the pee analyzer contraption. Did he not even see where the order came from? A memory care facility, with a "young healthy man with early onset Alzheimer's" - I rarely tell that to anyone because nobody would believe such crap. That's when I got my husband on the facility medical staff care and it's the best. He is closely watched for signs of sporadic bouts of diverticulitis, only had a few but they watch out for the signs. So, you seem to get it, sounds like your outing to the blood draw center went swimmingly, you would understand the logistics of getting a 6'4", 220 pound athletic guy into a small Honda car... the last time he was transported to the hospital, after a fall, he took a real good swing at one of the EMT's, and ended up at the hospital without his shoes, that were on when he left... Thank you for such good thoughts and advice.
Myrtle, you and Wolf need to team up and open a counseling office, between the two of you I might just survive this horror movie. Yesterday, I tried to call the medical imaging place, they were closed for the Monday holiday. So, I thought that let me off the hook. But today, after reading your above post, I called and scheduled the appointment. Will keep you updated, and thank you for helping me see through the fog.
Myrtle, that was a commendable comment. No one could have said it better (especially coming from the ranks) and it looks like you swayed ladylimbo into action. I love to see encouragement and response like that.