I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. You never know what can happen, and I hope you all have a Plan B.
Your blog rings a bell. I had gotten to the point oftrying to stay awake during the day,if I dozed off Sonny took advantage of it and got into everything,especially my sewing room which was off limits to him. I eventually had to tape all the drawers and doors on my cabinets shut.It came to a point when I ould not even go outdoors and leave him in the house and definetly not go away. You are right,there is nothing worth the chance of something unexpected happening.Thanks for the reminder.I have to say,it is so much more relaxing with him in the NH now and he is happier too. Alll the women adore him.
I have not left my DW alone for around three years now. Thank God for Adult Day Care, but we had to move three hours away from the family, to be able to afford it. We moved back close to the family, for about a years time. We could not afford day care there (Cincinnati) and I never left the DW home alone, ever. The only way to go to the store, was to take her with me, which is very stressful. Family, I guess, means well but only when it is convenient to them. I would be a nervous wreck if I left her alone and my car broke down, what a terrible situation. I feel your pain.
That's why I got Great Call. If you need help of any kind, push the button - you take it with you anywhere, anytime. If you don't answer them, they will call 911 and tell 911 where you are. Sort of like OnStar - which I also have. I take it with me when I walk the dog, anytime I'm inside or outside or away from home - it stays with me. DH can't use the phone or know to push a button anymore, so I can't leave him alone anymore.
"Can I leave him alone?" was the most important question I wanted the neurologist to answer. The last round of tests answered that and I no longer let Jim stay home alone or walk the dog alone. He is somewhere around stage 5, but in an emergency I have zero confidence that he would be able to ask for help, show them his bracelet, give someone his address (or where to look for it in his wallet), or explain his situation in any way. I do let him stay in the car when I go in shopping but I'm borderline about whether that is okay or not.
I understand that panic, Joan. Thank goodness it turned out well for you both.
By the way, the neurologist would never answer my question saying that I was the one best to decide.
I was just thinking of making a quick shopping trip with my daughter. She is pregnant and wanted to look for maternity clothes. But 2 years ago we went wedding dress shopping and my DH went off by himself in his truck. We had taken a driving test and they said he could drive with me in the car. They would not take his license. Well, he had an accident. He hasn't driven since then. But today he said he was going for a bike ride. Last time he rode his bike a year ago, he got lost. I know deep down he cannot be left alone. This post Joan made me know he will go on our quick shopping trip. I have given up my part time job because I knew it was time. Thanks for posting this. It would be my luck my car would break down and it would be a long shopping trip. I can feel the panic you felt reading your post. I have felt that many times just running to the store and my car didn't break down. Just worrying the whole time what is he doing in those 30 minutes. Not worth it. We too like teddy Grahams.
My husbands case worker told me at diagnosis that I could no longer leave him alone, that he was considered a vulnerable adult and I could face criminal (or legal, not sure what she said) charges if he was left alone and something happened. Any one else heard of that? Sure scared me.
I am certain there are laws and regulations with regards to disabled dependent adults as well as children. we have discussed before the yays and nays of leaving them alone many topics here. if a neighbor or relative or even a case worker thinks there is neglect or abuse or leaving them in precarious dangerous situations without a way to get help then theres plenty problems. if they cause a fire or die while left alone gosh only knows what charges. esp if they have already been documented as someone who needs guidance and supervision. the risks are probable especially if they get hurt, die, or cause harm to another. I know when mine was into everything it was virtually impossible to let him out of my view. they can get into trouble faster than lightning. a whole myriad of legalities could crop up with any array of issues. so be very cautious. divvi
I still leave my DH by himself for very short bits of time. Like Sid, he sits in his chair and watches TV and gets up to go to the loo or maybe get himself a little snack. Because walking is not easy for him, wandering is not a real worry..he could not get far but a fall might really cause a huge problem with his hip replacements. He will answer the phone and take messages for me..does a good job at that too! But I do worry about him being alone..when I am outside I have windows up so I can hear what is going on inside...so far he is doing well but I know things can change on a dime..
An excellent reminder, Joan. To me, leaving someone with AD alone ... if that person is beyond the very early stages ... is asking for trouble. Too many unexpected things can happen as you just experienced. Sure, odds are that things probably won't go wrong if we leave a spouse unattended just for a "little while." Spouses with AD may not wander ... until they do that first time. Spouses with AD may not fall ... until they do that first time. And just like with the driving issue, spouses with AD can continue to drive ... until that first time when they have a serious accident or get lost far away from home or have some other serious mishap. Although never a boy scout, I have always liked their motto of being prepared. I for one have much better peace of mind being overly cautious than taking a chance that something might happen, which is why I made sure that Clare stopped driving just a few months after her diagnosis. Was I being overly cautious? Perhaps. But I slept better at night!
Up until recently I was able to leave my DH alone, although I had been taking him with me to the store, church etc. just for a change of pace for him. But since he walked into someone's home uninvited three weeks ago, I have to watch him like a hawk. I've been accompanying him on the walks, which are becoming more burdensome. He always announces that he's going to take a walk and then is quite surprised when I tell him I need to go with him. I try to stall him sometimes by an hour or so, but he remembers at least 10 minutes before our scheduled time and gets very antsy and insistent that we leave. Boy that memory sure remembers what it wants to!!
This is harder than anything I have ever done -- it was so much easier with my kids -- put them in a playpen for a while or a bouncy chair -- can't do that with a 63 year old. This situation for all of us just plain STINKS!!
I, too, am struggling with the question"Can I leave my 65 yr old DH alone for short periods. "Dr says moderate stage . I think 5 on Fisher Scale. However , his speech and language is more compromised and has been. Atypical AD, I've been told. In one year since Dx, I have gone from leaving him for an afternoon to an hour or so and now I'm questioning leaving him at all especially since this discussion. We are at our vacation home which we've owned for 8 yrs. Yesterday, driving back from shopping, I asked him our address and he did not even know the street never mind the house no. He told me he doesn't know house no. because we no longer have it on spot next to door. ( will def replace now)
Chances are he is fine at home or a short time, I usually do things early am while he is sleeping or just waking . However, this morning I have decided not to leave him to go to church.
If I stop leaving him for short periods to go to therapist, a local store, a quick walk etc. I am feeling trapped! But, if something happened, I don't think, he could make a call and explain situation or make proper judgement. So, now I think I've answered my own question. I CAN NOT LEAVE HIM.
This discussion has also got me rethinking whether I can keep DH home for short periods of time, as I have been. Like you, Lorrie, I have been leaving him alone in the morning when he is still sleeping, and I do leave him alone when I go to church - this has been a part of our routine for a long time, and for some reason I feel secure in leaving him alone at periods when he has normally been left alone. I always leave a note to let him know where I am going, and Sunday morning is one time when all the neighbors are around. He is in stage 5. I think of the volunteer activities I am involved in that I can't do if I can't leave him alone. These are not active in the summer months, but I've decided I will forgo them in the fall, rather than leaving him alone. If I am lucky, my caregiver will be here on one of those days to cover, but I can't dictate when I want the caregiver to come in, I can't find anyone to hire, and otherwise I have to rely on neighbors/friends/family - something I am reluctant to do too often. And I would rather use that support network for the unexpected or unusual such as doctor's appointments. And so yes, I will feel trapped and resentment will build when I get frustrated by not being able to do the things I enjoy doing, but I guess I don't have any choice.
So glad you responded. Feel like we are in very similar circumstances. Thank goodness and Joan that we have this message board.
I ,also have support of family and friends but save them for things I must do or are special things I Really want to do. Plus, children all work and have families and /or don't live nearby. One DD and family live five min away and she is a great help. But, she has a career and a DH and three children too.
The children have been saying come Fall , I will need to hire help. I have been resistant to that idea. He can take care of himself now and would be very upset if told otherwise. Hoping to maybe be able to work out a schedule month by month or week by week, for someone to " visit" or take DH so I can get out .
ladies those of us who have been in the trenches for longer than we want to admit know the feelings of entrapment. but yes unfortunately we must buckup and accept that our spouses are not able to safely stay at home alone anymore. we wait and make excuses because we cant fathom the idea of that trapped feeling of having to be 24/7 on call with them. I had to take mine with me anywhere I went. period or not go, or hire someone to sit him like it or not. he finally got to the point I couldn't get him in out of the vehicle without a lot of resistance, so the decision was made for me to hire inhome agency help. it was a godsend to get over that hump and be able to finally share the caregiving enough to be able to have a few hrs alone time. it does get easier once you find the right help. but that all encompassing never looking back now, is hard to get over. it means we can never go back.. and its very difficult to move forward and see whats coming. overall its a much healthier safer decision to know we cant leave them and find a way to overcome that burden. like you say this discussion is to help preplan and prepare against any and all detrimental situations that can and very likely can occur. it only takes once for them to get into some serious trouble. and we never expect it to happen. divvi
The changes that happen usually happen abruptly and catch us off guard. Last year DH was probably early/mid 5 and I generally did not leave him alone for long but could run an errand if I left a note. One morning I got up early while he was still sleeping and dashed off to the grocery store. I stopped at our son's for a hot minute and was gone for about an hour. I arrived home to a sheriff's car. DH couldn't find me so he called 911. He was so disoriented talking to the dispatcher that she also sent an ambulance for him. I was able to get the deputy aside and explain the situation. He was very understanding and when they (sheriff and paramedics) satisfied themselves that things were as I said they politely left. Thank goodness for the info I learned from this board. Monday morning we contacted the Sheriff's Dept and we are now listed has having a dementia resident and they have several family phone numbers on file should an incident occur again. So just like that one fateful morning, I could no longer leave him alone.
The downside of all of this is that it means more responsibility for the caregiver and especially feeling trapped in my own home. I cannot even go out and take a walk to decompress. If I take DH with me he has to tell me where to walk and how to walk which pretty much takes any of the anti-stress strategy out of the walk. It has gotten so bad of late that if I lie down to take a nap he cannot find me (in our bed) and thinks I have left. If I am in another room and someone calls on the phone and he cannot see me, he will say he is alone and everyone has left.
I seriously think I could cope better if I did not feel like a prisoner in my own home with no freedom to come and go. DH goes to day care but the drive eats up at least 1 1/2 hour of every day. Some days I just come back home and sleep.
AD is a parasite that sucks the brain out of the patient and the life out of the caregiver, and it happens outside the notice of society.
Lorrie, I just read through some of your previous posts on other threads, and I agree, we are in similar circumstances. My DD and DS are willing to help, but they both live an hour and a half away, and have busy lives of their own. I have a sister that lives about 20 minutes away (when she is there) and she is a great help, but I have to live within her schedule when I make requests for assistance.
I've spent the day trying to figure out how to go about finding someone to sit with DH on Sunday mornings so I can go to church. I'm pretty much resigned to giving up my other outside interests because unless it fits in with the caregiver schedule I won't be able to leave the house, and I have already talked to our choir director about practicing at home instead of going to practice during the week. But I refuse to give up my Sunday mornings at church. I NEED my Sunday morning church service to help keep me sane for the rest of the week. And I am afraid that if I ask DH to come with me he will make a scene, or try to leave the church in the middle of the service.
bqd, yes I understand about Sunday morning church. We haven't been for the last two Sundays. We quit going because DH doesn't seem to even realize a service is going on. He just wants to talk and visit with those around him. He also is having more trouble walking so it's hard to get in and out of church. This is so important to me. Hoping you and I can find a way, bqd.
I sit here a week later after the car incident, needing to go to the Post Office to send something overnight. I feel like a caged animal. I do not dare leave the house. Awful scenarios keep going through my mind. What if I get into a car accident? He'll be all alone in the house for an undetermined amount of time. No, whatever I have to do will have to wait until tomorrow when he is in Day Care.
Joan, The reason I stopped leaving DH alone was the thought of getting into an accident and being unable to tell anyone that DH was home alone. If the car broke down I could always call someone. But if I was knocked out who would know. And yes it is like being a caged animal. I am very lucky to have DD still at home to watch her dad. But I try not to make her do it very much. She needs as normal of life as possible.
This is the reason I had to leave my job. I was delivering papers in the early morning. DD was home but asleep. And one morning I found our front door open at 4am. Anyone could have walked in or he could have walked out.
The other big worry with them being alone. Door to door salesmen. I have a sign on the door "No solicitation" But still get them. Guess the younger guys don't know what that means. I worried someone would take advantage of him or get into the house while I was gone.
Also have found the freezer door open, water running full tilt in the bathroom, dirty dishes in the cabinets, tv volume turned all the way up, and all of this while I am home. Just think what he would dream up while alone!
Joan, is there anyone around, a neighbor who could sit with him for a half an hour or so??
"Caged animal" is a very appropriate description for the way I feel. Last October it became clear that I couldn't leave dh alone anymore. Wherever I went, dh followed. He didn't complain but I sure did inwardly. By April this year I had dh in daycare two days a week, 4 hrs. each day. My sanity was teetering on the edge. One day dh absolutely refused to go to daycare. Nothing I could do about it. I was so disappointed I just shed tears. Now nothing is so important that it can't wait until dh is in daycare. For two days a week I feel human again.
I live in an Independent Living Villa. There are 4 villas attached. I am in an inside one, so there is an alcove outside my door, and 20 feet or so from my door is my neighbor's door. They have a caregiver who is with them all day, so yes, if I needed to run out for a half hour, I could ask the caregiver to check on him. But after what happened last Monday, it's not so much what might happen to him while I am gone that I'm worried about. I'm more worried about what might happen to me that would prevent me from getting back to him in a timely manner. So I'm not going anywhere when he is home. I'll plan everything for DC days.
Joan,I know just how you feel,it's like being a caged animal,looking at the outside but not being able to go out.I had gotten afrsid to even take a shower,things happen so quickly and we would feel so guuilty if something serious happened. People say to me"Don't ypu feel badly,your DH had to go to a NH?"No,I don't feel badly and I am not ashamed I placed him. I hope your situation comes to an end soon,it will be better for both you and Syd. Good luck and prayers.
I know how you feel, too, Joan. It was so nice when I could just leave him alone for a couple of hours - then it changed in an instant! Thank goodness, he will go to DC for 3 hours each morning during the week (not weekends). On weekends, it's terrible. I can't even go outside without him following me. Hard to walk the dog now, too. Thankfully, I can walk her where I can see the back and front doors. Did I say I hate this disease???!!
Dealing with this disease is such a difficult balancing act. We know we need to keep them safe, we know we want to do our best for them, but the intrusion on our own personal space and well-being is mind-boggling. I too am a regular churchgoer and up until last week DH would sometimes accompany me. Last week, I realized he was just too antsy, especially since he needed to use the restroom and then wanted to go home after he did. If my daughter can't be here for me to attend church, I just won't be able to go. Some days it's just too much and I crawl into that black hole of depression while he happily hums his favorite tunes and goes for his walks with me tagging along for his protection. I'm with you, Vickie, -- I HATE THIS DISEASE!
Reading this makes me realize just how lucky I am to have the freedom to go out and about again. Dado went down so fast in the 2 and half years I watched him, and though it was not a long stretch it was SO INTENSE!!
As hard as it is having to had to place him, and feel like I have had to lose him in some ways, reading your posts brings it all back and I know I would not have made it much longer. Oh ladies and guys I hope you can hang on.
Thankfully, I didn't have to place Claude as my kids moved home and helped me. They both worked during the week so Saturday was my day to get out. My son stayed with him and my daughter took me shopping, to get my hair cut, lunch out etc. We usually were gone only 4-5 hours, but I felt guilty leaving him.
Thinking back, I felt guilty having to leave my kids with a babysitter when I had to go back to work :-)
some thing similar happened to me too. I had the aide here from hospice bathing my DH. I asked if I could run to the store for milk and back in 10min. ok. bathing takes about 30min. plenty of time. get to store get milk get into car, no battery. panic. its 15min into bathing time. check purse, nope left cell phone at home!! big mistake as aides cell in in my phone. no way to contact home. geez. adrenalin sets in. I literally RAN home over a mile and half as it started to pour down rain. cars whizzing past over and over, and I thought don't they see a frantic lady running for her life? no one stopped to ask or anything. I made it home by about 45min. when I walked in drenched out of breath and on my last legs, and of course! I had on slides and they made running very hard so I had to run barefoot. I profusely explained leaving my cell and sorry for the delay. it was the first and last time I ever left without my phone number one, tennis shoes in case I have to run for it! and an umbrella in car. the milk was rancid after I went back to get the car and new battery picked up. lucky for me the service station was next to the grocers. what a nightmare. so if you attempt it, cell phone! comfortable shoes! a stored number for a quick taxi to call, or ER set up with a friend to call. hard learned lessons. I got sick from the cold rain, and blisters and cut feet for days. better yet always have one of those battery chargers in the car!! divvi
All really good points some I hadn't given much thought to but I will now. Store is either 3 km away or the one I got to the most is 16 km away. Usually no cell service in a lot of places.
I am grateful to you all for sharing your innermost feelings and personal experiences. I was so unprepared for how quickly my DH would decline and I would be thrown into this nightmare! You all may have saved me from having to experience some of the horrors that could have happened!
However, this realization is devastating! It fills me with sorrow for the man he no longer is..my strong, capable, Independent hubby now cannot safely be left alone at the age of 65. Tears fill my eyes as I write this. And, I ,at 63 retired, children finally on their own have lost all my dreams and now my freedom!
This disease brings loss after loss! Somedays, I don't know how I will get through this.
Just a small addition. Consider getting a medical alert bracelet for,yourself that states you are a caregiver to someone with dementia and address. So if something happens to you and you can't communicate others will be able to take action.
That is a great idea, paulc. In my cell phone directory I have a son listed as ICE (in case of emergency). It might be possible put the dementia care giver info with an ICE number in the phone, too.
That is a good idea, paulc. Thinking for two is difficult enough, but thinking about every possible scenario is mind boggling!
On a more positive note, I was speaking to a neighbor today who has come over before to sit with DH, and he has agreed to come over this Sunday morning. I'll take it one week at a time, one Sunday at a time. The neighbor was telling me some of the things that they talked about the last time he kept DH company - and my dear hubby really opened up to him! Don't know if its a man thing, or what, but for once hubby didn't complain about having a caregiver when I went out. Now, I am going to have to give the neighbor some of the basics on how to converse with someone with AD (like not to argue) but I do feel better about the whole thing - my one morsel of being part of society (church on Sunday) is still there, even if the rest of the pie is gone! Savor those crumbs!!
another idea is I had a plastic sealed card hanging from my rear view with pertinent info stating I was a caregiver who to contract etc if I wasn't able to respond. and one on my purse incase I was in a public place not in vehicle. we do have to try to foresee the unthinkable. just in case. always better to prepare in advance. there are small id packets that can be purchased for about 7dol which you can put your photo id, your blood type, medical info contact info and it velcros around your seatbelt. ems knows to look for these red colored emblemed packets. I had one for my DH on his seatbelt while out in the vehicle with him incase of accident and I couldn't respond. just a thought. you can purchase online. the one I have is called Rescue Facts. can google but there are many medical alert ID packets available now. divvi
Thanks Lorrie, I hope you find a way to solve the "Sunday morning" dilemna as well. I have also contacted a couple of agencies to see if I can hire someone for Sunday mornings - I don't want to HAVE to ask the neighbor all the time - its not really his responsibility. Unfortunately, because of where we live, I am not hopeful of being able to find a paid caregiver that will work on a Sunday.
Good advice, divvi. I think I have all of the above! LOL Plus the Medic Alert for both of us; copies of everything in the glove box of the car..you name it - Just can't be too careful. I don't leave him alone, but I think more of something happening to me when we are apart, so have tried to prepare for that event, which, hopefully, never happens.
Vickie, I worry about what if something happens to me more than I worry about what happens to him also. I can't leave him at night. I stay up all night because I never know when the next time he is going to want to go outside without clothes on again. The day time he is alright so far. That could change soon though! KNOCK ON WOOD!!