I am obviously in some kind of slump. This is day 3 of basically doing nothing, not even going outside much. Mostly just sitting on the couch watching TV, playing on the computer or reading. What the hell is wrong with me?
We were supposed to go to a lake for the day but got in late last night (from babysitting grandchildren). I asked DH if we should skip the lake but only on the condition that we do something fun with today. Swim in the pool, go visit relatives, SOMETHING. He of course agreed.
He slept until noon and was back in bed by 2:30. It's now 6:30 - he's still sleeping and I am disgusted with myself. Another day shot. Yesterday was pretty much the same. I can't even get him out to do groceries with me.
And here's why I am disgusted with myself: I KNOW he needs a lot of sleep, I KNOW he has no initiative at all and I KNOW that everything is up to me. I need to take charge, tell him to get ready, tell him to get in the car and I need to just make it happen or leave him sleeping and go out by myself. But for some reason I just don't always have the gumption to do that. I'm so tired of being in charge of everything from where we go and when, meals, doctors appointments, social engagements, etc. to when he has a shower and changes his clothes. Sometimes I just find it quite overwhelming.
And I know that this is the good time - everything's only going to get worse. Right now he can still be left alone and except for cuing is able to take care of his ADL independently. And rather than enjoy today I am worried about how on earth I will be able to cope when things get worse.
I hope you will get out of this "slump". I am in the same condition. I am bored...no place to go...no people to see....fairly new state....and husband sleeps most of the time. When he isn't sleeping he's doing a crossword puzzle or looking at the guide television surfing. What you have described above is pretty much what is going on here. I couldn't have written it better myself because this is my life!
Hang in there....sorry you have to exist like this ((hugs)) Lullie
Dear ring, There is nothing wrong with you...other than the fact that your husband is incredibly sick with a disease...only some of the world can understand. Layers, layers and more layers exist with all of this. My husband, passed away this January...and I still feel stuck. I have to say I am in the middle of this and I so want to get out...yet, than there is a big part of me that feels "dishonest" if I move on. I seem to cry more these days. I think for the past seven years...I just inhaled in all in. Who could handle the the enormity of it all...? Now, I feel the real sadness that I kept under is allowed to surface. It is tough, too be sure, but I also believe...we "have to get into it...to get out of it." Not really sure if that will ever happen. My, John, was like so many of you...the greatest gift of my/our life. Here's to all of us. Love, Robyn/Leigh
Ring Can you not get help! Someone to come and stay with him so you can get out and do something for you? Call CCAC and insist on the help. Tell your Dr. That you are getting depressed and need to get away from him for a few hours. They can call in CCAC , mine did. When the case manager comes tell her how bad it is now. He needs to be reassessed. Don't let then push you around and tell you he is fine. Start to cry if they do, and I mean really cry. This is nuts. You need help or your going to get sick. Come on Ring fight back!!!
Since none of you know me personally, I must tell you that Jazzy takes no prisoners! If I want something for my DW's care or mine, I raise cane until I get it. I am Metis and my kids often say" look out, Mom is on the warpath. Someone is going to get an ear full" I will not allow any bureaucrat to deny me and DW what is needed for his care or my respite.
That is just me and I know it is hard for so many you to get the care you need and each province, and state and country have their own rules and regulations and it ticks me off to hear all the pain each of you have to go through to get the needed help. It is just sinful that with this disease as rampant as it is that there is so little help for caregivers. We have to fight for ever thing and we are so tired and worn out. When are they going to open their eyes?
Jazzy on the band wagon! Sorry guys, I just had to rant!!
Ring, I read you loud and clear! Life with a LO who sleeps most of the time is incredibly boring! Because I can't leave my DH home alone, that means that unless it is the day the caregiver comes, and I can do something fun on my own, I have to find something to do with my DH that we both might enjoy. We can no longer travel any farther than a couple of hours, which means that if I want to go anywhere, just for a change of scenery, it has to be within a couple of hours drive. So here is what I am doing - once a week, usually on a Saturday, I find some place to explore within a two hour radius of our house. Or, if its raining, we go to a movie. (he doesn't always understand the movie, but at least he sits quietly while it is on) I let DH know ahead of time what we are doing. We leave after breakfast before he has a chance to get back into bed for a morning snooze, and we usually have lunch somewhere on the road, as part of the entertainment (at least for me, one meal I don't have to cook! :-) ) Last Saturday we went to a museum and tea house and we were home in time for afternoon nap. Yesterday we went to the Bonnechere Caves, had lunch in Eganville, and were home in time for an afternoon nap. If he is missing the extra sleep time, it isn't apparent to me. In fact I think the change in scenery keeps him from getting bored as well (I've been wondering if he sleeps more because he is bored), and if he nods off in the car it doesn't bother me. So I get the outing and change of scenery I need, and am happier for it, and he gets a bit of an outing too. I dont' know how much he gets or retains out of these outings, but that really doesn't matter, does it? The challenge for me is to find activities that are suitable, since he does use a cane (the Caves were a stretch but we managed), and to find something that would interest both of us within that 2 hour driving time. Yes, this means that you have to take charge of the situation and just go and do it, but since you are in charge anyway, I know you can. And I think you will start to feel human again if you do, even if all you do is go down to some of the locks on the Rideau river and watch the boats go through!
I too can relate to the boredom....house isn't getting cleaned like it should just the basics. Hubby sleeps 18 hours and 6 hours he is awake I tip toe around him to keep him calm. I am now doing his little jobs ie take out the garbage. I sit waiting every day for the phone to ring and am really going into a funk. Can't have granddaughter over because of him so she is missing out on her summer at the cabin. Oh Just let that phone ring tomorrow.
That is it.....our LOs do so much snoozing that we tip toe around and don't get a damn thing done...I have to wait to hoover the floor or use my floor mate to clean the kitchen floor. Meanwhile, if DH is awake the TV is blaring..so I go outside and pull the " Alzheimer's" out of the Lawn ( that would be crabgrass...I have said before Alz is the crabgrass of the brain...well I have real crabgrass in the yard) and my " boys" Mr Peepers, Kisa and Chanclas, keep me company, Kisa pestering me for hugs and piggy back rides ( these are my boy kitties outside). I can't tell you how many barrels of crabgass I have pulled out. Just today, while weeding, I was thinking about a thread about doing something fun or for ourselves or for "life after" and for the life of me, I am just lost. I just don't know what I would want to do or where I would want to go. Maybe I'll just stay home and get the house back to the standard it was when it was new... I hear you loud and clear.... One thing that has helped is seeing my doctor about DH's illness and she really understands as she makes house calls of dementia patients as well as those who can't get to the office....she is concierge. The advice about seeing the doctor and discussing the boredom which may in effect be a form of depression, might be worthwhile. I ended up with migraines and ended up going to a neurologist who put me on Sertraline..and it has done wonders for my outlook and my ablilty to contend with the dozens of repeated questions as well as controlling the weather related migraines I was getting. Take care of yourself...You are worth it.
Ring - you said it well it seems for many of us. My husband does not sleep all day and would be glad to go, go, go. I don't want to. I hate coming back and he has no memory of what we did. I know I should be glad that he enjoys the moment, not whether he remembers. We both sit all day watching TV, he does word search or goes out for walk around the park (when it is not too which now it is and he is not happy about that) and I sit at my computer.
I too am tired of being in charge. My daughter always accused me of being in control -controlling everything but now I realize I really did not. Yes, I took care of finances and made those decisions, but that is different than when you are in control of every thing big and small. When you have to make the decisions by yourself. When you Mr Fix-it can no longer fix it which means either you figure out with him helping or pay someone to do it.
Yes, is exhausting and I am tired of it. I hate it.
I am in the same place as all of you. I was just thinking about the slump I am in. I am so tired. I guess I am bored, but a little depressed too. I would love to go somewhere and not have to stress over my DH. Whether he is keeping up or walking off. I just wrote in my journal, I want a normal life. I don't know that I would recognize that. I am getting snippy with people. I need to call and apologize to my mom. She is always there to listen. I know she realizes that I don't mean to. But I don't want my support people to have me take it out on them. I feel like the world is leaving me behind. I never really went many places before, but work. I so miss my job and seeing my customers. I am 51 and not where I thought I would be at this point. Just like all of us here. Sorry going on!
Thank you for your understanding and words of encouragement. Things aren't a lot better today. He had a dentist appointment. We were going to spend the morning out doing errands afterwards and go out for lunch together. The first stop after the dentist, he got in a snit about something and that was the end of our outing. sigh.
bqd, I know I have to make plans for us to go out and I do things but right now I am just sick of it all and emotionally really tired. And good for you planning one outing a week but that still leaves six other days to get through.
Jazzy, as I said in my original post, DH is fine to be left on his own. The problem is not that I need someone to come in to provide respite, the problem is that right now I don't have the gumption to do it anything these last few days. And by the way I am just not a fighter. Period.
I am aware that I am at risk for depression but don't think that's the case yet. I will however keep it in mind if this continues.
It was comforting to hear so many others are struggling with this issue.
Yes yes yes, bored is what I am, also drained, exhausted,worn out and depressed. I don't know about you girls but I admit I'm depressed. Im trying my best to get myself out of this funk. but its hard to do here in this alz house.My dh doesn't really want to do anything. If I do plan to do something I can hardly get the man to shave and shower. He refuses help. Wants to do it himself. I have problems getting respite $10 bucks an hr will drain u pretty quick. i feel like im a prisoner in my own home. also I wonder aboutI your spouses sleeping so much, could it be medicine overload?
Ring look at the positive ...sleepy time could be from 6:30 aM to 5pm and then into hyper speed all night. A lot of espresso helps in the AM to keep DW up and functioning . I use Lorazepam to slow her down late afternoon- early PM and Ambien at bed time. Every door is locked and alarmed and a full night's uninterrupted sleep in a distant memory. This disease shows no mercy to patient or caregiver. I've "diubbed" DW my Wandering Jew,.. she's pacing incessantly right now 10:55pm
I echo you! Ten dollar and hour...I don't know where you live, but that's a bargain rate. Today I checked into care in the home....miniuim 3 hours at sixty hours for light duties. I also checked on a temporary respite with high function residents...160 a night...minium stay 4 nights. If was very lovely however if I should place him there later it's approx. 5500 a month (private room). Of course, medicare and insurance will not pay for this as it's self-pay. I am still young, and this would deplete a great portion of our savings within a several years. I don't understand how families afford this. So yes, we are prisoners in our homes.
I pay $23 an hour with a 3 hour minimum for in home care here in southeastern PA. The respite we had in June was $275/day in a skilled nursing facility. I am ready to place him . I'm getting tired of it all. After 2 years of agitation and aggression we finally found the right combination of meds and he was really good for 5 months, until about a week after his respite stay. For the last two weeks he has gotten nasty and hits me, grabs my clothes and pulls, and when I offer him a hand to help him up out of a chair he squesses my hand so hard the bones are crunched. This morning when I was helping him in the bathroom he said I was lucky he didn't kick me in the head. Nice thanks I get for washing him in the shower and dressing him.. He can't do any of it for himself any more. I'm getting so I actually hate him. There! Yes, I'm depressed and hate it all.
I am right there with every body too. I do not want to make one more decision. I exhaust myself trying to entertain him, and he does not remember doing any of it. This is a life trapped in side a circle of repetitiveness that never ends. I hate it. Each day is an emotionless bottomless pit.
I am glad that my wife is moving into an ALF in the beginning of August. I think timing is as perfect as possible. She isn't showing many of the symptoms that are driving people to place (loss of ADLs, violence, grabbing, not knowing where she is or who you are, dangerous behaviors) but her behaviors are exhausting to my and our son and progression has sped up since early March. I expect her to be showing some of the more extreme symptoms in the next year. She has accepted the move and is involved in planning for it. It is going to be much easier for her to adjust to the move now than if I waited another 6 months. One of her sisters commented that the fact she is accepting the move is a sign that it is time, that her executive (decision making) function is so poor that she is accepting my decision despite her initial rejection of the idea.
Unfortunately I realize this is not an option for many people. ALFs are expensive and many can't afford them and Medicaid is oriented towards placing people in NHs, not ALFs, and a NH would be very inappropriate for my wife.
It sounds like so many of us are in the same position recently -- burned out and tired of making so many decisions. My DH is not really aggressive, but very difficult to redirect. I know he needs a lot of structure and I'm at a loss as to how to do that for him at home. Right now he's in a day program two days per week and I'm looking at getting someone in 3 days per week at 4 hours each day to help with his repetitive walking. He still likes going out to eat and seeing movies and going for car rides, but that's getting expensive too.
The financial aspect of looking for placement is so overwhelming too. I found one place not too far from us that will take Medicaid for assisted living, but DH has to be 65 to enter (he's 63 now) and there are 78 people on the waiting list for 32 beds.
Why does everything have to be so complicated? I have always believed in trying to take care of ourselves and paying our own way, but this disease is so decimating in terms of constant care that I think everyone who deals with it regardless of income level needs some extra assistance from our government somehow. I guess it would be considered socialism but at this point I could care less about political idealogies. The bottom line is quality care for the person and help for the family.
Alzheimer's caregiving needs to be a team effort -- no one can do it alone.
You are correct, very few people can afford the proper care required. I now see why most bankruptcies are related to medical bills. For me it isn't the doctors a drugs but the need for full time care. And if I was retired I don't see how I could do it, weekends and evenings push me to my limit. In addition to costs there are lost wages and paying for damages. I do work full time, others find that they need to stop working. I might work but I have to limit my extra hours, I can't do part-time consulting from lack of time, or attend networking events, or consider a new job. There are so many invisible costs. Plus the damage to our own health.
Right now the best way to remove the burden from ourselves is divorce. Strikes me as a suboptimal solution.
even a divorce would have ramnifications. a divorce judge would weigh the afflicted persons necessities with regard to divisions of assets and the healthy spouse could walk away with a lot less than planned. they take in consideration how much the sick persons needs will be as well and honestly I know the legal field quite well, and a judge is human too and probably wouldn't look kindly on divorcing an ill spouse whatever the reasonings. and of course the ill spouse would have to have their own attorney who would be very aggressive trying to get the sick spouse all they can, without a lot of sympathy from anyone in the court system. its iffy at best. and medicare /Medicaid laws are changing all the time to overcome divorce as an option.. divvi
Divorce is not always possible with someone with diagnosed dementia from what I hear.
As for working, I could not make wages that would even cover a caregiver when the time comes. That might be why women more than men have to stop working - we don't make the higher wages. l
It's even worse, in my view. I make a good salary. Too bad I have a big mortgage. So my salary isn't enough. It is going to take my salary, savings, retirement savings, salary, disability income, and lots of family help to make it financially. If any of these legs get kicked out from under me I'm in trouble. I can sell the house, but if I then move away from work to get cheaper housing, I will probably spend all of the savings on higher commuting costs, plus I will have less time from the longer commute. It is very tough to survive this financially.
And I keep hearing from people in rural areas about lack of dementia support, period.
Let's see, quit work, move to Montana, (lower housing costs and ALF costs), tell son to forget college, lose my support network, be far, far away from family. I don't think so.
Well obviously, I'm from Kentucky, in the far western end, Very rural. So, I guess I am kinda lucky on the caregiver wages. Help is ok here , for $ 10 hr. sorry to hear some of the exorbitant prices you guys have to pay. That's a bright spot in my day!
Not only the reasons stated above about divorce but I think the medicaid folks are wise to this solution too...Divorce was suggested to me as I am the one with the assets...but that being the case I would have ended up paying spousal support. The idea that one can "divorce" to protect assets but still live in the house and care for the LO while paying spousal support sounds much to complicated and either way I would have ended up broke so what was to be gained? Nothing but maybe sense of guilt.
MaryinPA, your post tore at my heart. I hope you are safe, have you spoken with his doctor about increasing or changes his medications? If not, please do so first thing tomorrow. I am not sure what is holding you back from placing him? Please, please know I am in no way judging you dear lady, but when you said how bad he has once again become, and how you feel like you are becoming to hate him.... well, these are huge red flags that something needs to change.
Of most importance is your safety, his as well. Having met many spouses in the past 4+ years, I have yet to meet one who said they placed too soon. But I have met many who said they waited entirely too long, some so long that all love and empathy for their spouse was completely gone. One wife actually dropped her husband off at the door, said "I am done" and drove off. She has never been back even once to visit. He has Parkinson, not dementia and is very aware that she abandoned him.
I know you love your husband, this damn disease takes so much from us, please don't let it take your love for him too. I never reached the point you are now, but it was certainly hard to feel any love when I was being screamed at and hit daily. Placement doesn't have to be all bad, for us it has brought many blessings.
We will support you in whatever you decide, but I am worried about you..... ((hugs))
I have not talked to the Dr yet but I stopped at his office today and talked to his receptionist. She wrote down everything I said, including that I was concerned for my safety. She said he will call me.
Today I got a new caretaker today ( a young thing who is in nursing school ) and I warned her about him just swinging his arm and hitting. Also warned her about the hand crunch. She got along OK and even got him to the bathroom to change his Depends. I told her I wanted to know if he misbehaved as I need to talk to the Dr about it.
Got a call back from the doctors office an hour ago. After asking a lot of questions about his general health like did he have constipation, diarrhea, or an infection, he said to increase the dose of Abilify that he takes with the Celexa. Then I am to let him know how it goes.
I should give a week, shouldn't I? Actually he's been better today without the increase.
Thanks Jazzy. We did get up to the cottage for a few days and it seems easier up there. If he sleeps or is uninterested there are lots of things I can do including jumping in the lake and going for a nice long swim. Last summer was a nightmare and so I had qualms but this year he seems really happy and content to be there even if he does ask me 20 times "what day is it?".
I did come to a realization which most of you probably already know. Sometimes when he does something crazy I respond internally with a negative reaction. A kind of put-down, even though I don't often say it to him. I wondered why I was thinking such "mean" things. It has become clear to me that when I don't....when I look at his bizarre behaviour with compassion, my heart feels like it is going to break. I guess it's pretty obvious but I'm just now understanding that my "mean" thoughts are nothing more than a defence mechanism for myself.
Anyway I am feeling a bit better. Acceptance and swimming - those made the difference for now.
Insightful. I think I have put some walls up unconsciously to keep my heart from breaking. When a relationship has lasted several decades, it is hard to always remember that everything he says now goes through the AD filter; he would never say hurtful things on purpose.
I am beginning to realize that acceptance is on of the most difficult thing for us. You have thus strong, capable husband and now we don't have him anymore.and what we have is not so easy to deal with. They can be so mean and difficult or child like. My DH is going to LTC soon, he is number 5 on the list as of last week, and I just can't get my head around the fact that he would rather have strangers care for him then me. Why does he see me as the enemy? Sometimes when he does what I think are dumb things for him, I just want to scream, but then I try to remember that it is the disease not my wonderful hubby that is in control now not him. Big hugs and try to remember that it is the disease!!!! When my DH goes to LTC maybe we can have a nice relaxing lunch.
"This, too, will pass." I went through a long period when I was seen as the enemy, and it was truly horrible. If you can just hang in there, a time will come when the realization of who you really are and that you are truly there for him will come to him, and you will be closer than you ever were in your life. Love and prayers.
Jazzy I am hoping that once your DH goes into LTC, because you will not be the "killjoy" that tries to boss him around and control him, he will actually be really happy to have you come for visits. You will be his sweetheart again and he will be glad to see you and spend time together during your visits. And you will have some peace between visits. This is my wish for you. :)
And yes, once he is settled, I'd love to have lunch again and can drive to Brockville if that would help.
I am placing my husband next month in an assisted living. I plan to go back to work and with the help of my kids I am hoping I can afford it. To me this is a better plan than medicaid Like many of u I am tired of it all. He is declining rapidly and has accepted the move but wish I had not told him as he is fixated on this now and is constantly trying to ask questions which he cannot verbalized or remember that he asked the question. I am putting him in respite for a week and when I get back I am meeting with owner to finalize everything. For me the decision came when I was emotionally ready to do it. For those of you who are bored, please look at your options and make a decision to move forward. The step forward may be small but that is okay. As long as we are moving forward we are making progress.
If your kids contribute financially be sure they give money to you and not the LTC facility. If they give to the facility might become responsible for bills in the future.