Yesterday we had a guy here who is a registered nurse and has recently started his home health care business with a partner. He is the one DH's neuro gave my phone number and had him call me. All my questions were answered to my satisfaction and he will bring a woman here on the 27th for kind of a get acquainted meeting. DH decided to go in his bedroom and I was the one who sorted out days and time and prices etc. After the guy had left DH decided to ask questions and look for all the negatives he could. I told him he should have stayed and asked the questions himself. The problem with DH is..he doesn't think he is that bad and his main problem is forgetting. He has no idea what a pain he can be and can ruin my mood and day in a heart beat.
I called the RN a while ago and we are going to try 3 hours instead of the 4 I had originally settled on. It is $18.00 and hour and when DH asked how much that's what I told him. His immediate reaction is "Where will we get the money from?" Like I told him if we couldn't afford it I wouldn't do it. He is so negative and always looks for the down side of things no matter what it is. Sometimes I think I would like to place him and get some peace and quiet for more than a day.
Okay folks, that's my vent for now! Wish me luck for the 27th.
I am having another issue with our home aide. She keeps setting the thermostat down to 65. We normally run it around 77 in the summer. If I leave she will crank it down, and then my DW is on the sofa covered in blankets. I have told her not to do that , but she says she gets too hot working . My wife really likes her and I am about to tell to find another job.
Good luck Jean21. My daughter is convinced that I should try that, but I don’t think it’s going to happen any time soon. He was rude to our friend from church who usually stays with him or takes him out to lunch, so I know he won’t be receptive to a stranger in his house.
Jean21, I'm with you. "He has no idea what a pain he can be and can ruin my mood and day in a heart beat." We have a CNA every Fri for 3 hrs and I'm ready for more. My hb is the happy wanderer and constantly mover of things. Missing at the moment: a bottle of barbeque sauce he opened yesterday and spent about an hour talking to whispering sweet nothings I overheard. Poopy pants twice this a.m. A total battle to change and clean. Gave up on his putting shoes on earlier when we took granddaughter to work. Was going to do "light n quick" shopping after dropping her off, but...no shoes; no shopping. After 2nd cleanup wouldn't put pants on, either; so he's roaming in disposable briefs.
Moorsb, I'd be looking for a replacement, too. Was inquiring about a woman who said she'd be happy to sit w/my hb. Asked a couple folk in the community about her: Both said "Lock up your valuables." So, she's out.
Placement is looming, and it really seems a waste of $ at one level because we CAN manage if he were cooperative--and he can be--sometimes.
Whatever happened to the woman who had offered her services, free, to someone on this site? If I remember correctly, this woman was already caretaking someone and also doing volunteer work with young people at the church.
We have an aide 2 or 3 days a week and she is great. Would never have thought that it would work out but DH has adjusted well and now I think he confuses her with me!
All due respect for those who indeed, enjoy freely working with dementia patients, but I'd shy away...A rare person who does this so I would be leery of their intent.. especially if I didn't know them or trust the person who referred them.. I am working on a plan to have a lady, who I know, come in once a week for half day, clean my house and keep an eye out for DH while I'm allowed a time out... DH knows her so not like having a total stranger in our house.. DH has never allowed anyone here,, even when our daughter was tiny and I wished with all my heart he and I could go out to an ADULT dinner.. and YES, it'll take $ that I could easily use elseware... but it will be worth it and also will get him use to outside care.. I cannot interest him in day care. He complains that I have friends and he does not...He will go and do things but we have to be joined together at the hip.. Not my idea of a relaxing day out.. when my friends hubbies offer to take him out, he'll have no part of that and sets out to find enough excuses why he doesn't want to go ...and of course, it's all their fault and he makes no bones about telling them so... This housekeeper will free up my time and also let DH that others are capable of looking after him if I'm not around....Between a rock and hard place...He is against NH or anyplace but under my care.. tho I have explained that there will be a time when I, a 100 lb wonder will not be capable of bathing, helping his 230 lb frame in and out of bath and bed, the john and all lifes little necessities..He is already verbally abusive, don't know when the physical abuse starts... I am thoroughly capable of doing my housework but figure this might be a step in the right direction,,, for me and DH. Good luck,,,Thanks for letting me vent, also...
peggy--you are on the right track. Get him used to "you" neediing help. and they can help him while you're away. It's not really inaccurate. There's a Lot more on your plate now, and the load will continue to grow. You are perfectly capable of doing your own housework, but there are other things, only you can do, plus you need occasional breaks. That's called respite and is for taking care of yourself. With help doing housework you get more done with less wear and tear on you. Plus, he'll get used to other help, which can be vital if other health issues arise.
Thanks, carosi, for your words of support... i still feel guilty for doing it this way.. In a real world, I would simply state my needs and hope he'd understand.. but that time is over,, He doesn't understand that being at his beck and call is taxing... Dementia has made him lazy.. He will not do the things he is well capable of... I insist that he do what he can and that makes him mad...as well as unreasonable... He even insists that I park a certain distance from the curb,,, I swear he measures it... Yes, I'll work on this guilt,,, I dare say the first week with the housekeeper and I'll be over it.. Thanks, carosi... for lifting my spirits.. and listening
peggy-sounds like a good plan. Dementia is changing the way your husband behaves. It should not make you a prisoner in your own home. If you come home refreshed you will feel better about caring for your husband. Who knows-he may actually appreciate you more.
Well I had a wakeup call this week. I spent most of the week crying & I realized it was because I have not been alone except for 3 hours to go to the funeral home for the viewing of a good friend of ours (I didn’t even tell DH about our friend’s death, because I don’t think he would even remember him). He stayed with our daughter when I went. I had an issue with this same daughter & I wrote her about it. She wrote me back & told me that I needed to get some in house help so that I can get out & have some time for myself (my other daughter has been telling me that for a while now) I told her that I didn’t think her father would accept someone coming in the house & she said that I was just using that as an excuse & that I could get someone trained to deal with Alzheimer patients. I realized that she is right. My daughters help whenever they can, but they have jobs & families to take care of too. So this week I am going to look into getting some help. Also reading what everyone has written here also makes me realize that it might be the answer I’m looking for. bluedaze, your statement “Dementia is changing the way your husband behaves. It should not make you a prisoner in your own home” was like the light bulb lighting up over my head! Thank you all for knowing just what to say when we need to hear it!
Peggy--dementia isn't making your husband lazy, it is making him SICK. I think this is an important distinction. If someone has cancer, etc., and they become incapable of doing what they used to, I think our reaction is different. We can understand why. With dementia, however, at the beginning they look the same and have no physical pain, so we are apt to think they are choosing to be difficult. It isn't really a choice on their part, it's due to the illness. It took me a while to learn that; I still have to remind myself occasionally when DH drives me nuts--even 6 yrs into this. If we were in their shoes, we would act no differently.
ElaineH--I had to reach the desperation level before I would consider daycare for my DH. One day, the light bulb just went on in my head and I knew I had to do something to save myself! Sounds like you had that kind of moment too, and I hope you find someone good to hire.
I have had help in the home for 2 months now. My husband gets upset and that upsets me but I need that time. I receive 7 hours weekly through a government agency and I am going to pay for a few more. It gives me time to walk outside and feel free instead of being behind a locked door.
I had to laugh at the story of the missing ketchup. I have to hide things all the time to keep them from disappearing. If I hide them in a hurry, I sometimes can't remember where I hid them. Also, my husband paused in a mall to speak softly and tenderly to a display of shirts. I didn't know whether to laugh or cry.
Wise words here... what would I do without you kind people?? Somehow, up to a point , we think we are in this alone... until we vent and get advise and loving concern from those who have been there.. Thanks more than you'll ever know....
I had in home help for half of our 3 year journey and could not have made it without it. If you get a good "fit" it is worth a million dollars. Our in home help was through the local Area on Aging and didn't cost me anything. She was here a 40+ hours a week while I worked. She loved Charlie and he loved her. I don't think the woman would have stolen a dime but then again we didn't have anything worth stealing.
I have home health for my mom through Nu-Hope, and they come 3 days a week...two for personal care and bathing, and one day for cleaning. They are fantastic, although their turnover rate is pretty high....but Total cost for my mom is $16.00/month, and that includes "frozen daily meals on wheels". Occasionally, there is one that is not as good as expected, but at this price, I do not complain much...at least someone shows up.. And my moms house does not really get too dirty...I steam clean the carpets about every 3 months, and close the blinds so you cannot see the dirty windows....
I am the one who spoke about the woman offering to come sit with dh for free. I didn't speak to her about her offer for several weeks because it didn't feel right. However, she did attend the same Support meetings that I did on Saturdays, so on the last one I invited her to coffee and grilled her about her experience, how did she get into this, credentials, etc. Basically, I think she is looking for her next position. The man she cares for is 85 and she doesn't think that he will live that long. She originally was hired primarily to take care of his wife who has recently passed. He wanted her to stay on and care for him until his own passing.
I think she is okay. She got all of her experience and expertise on the job. She just kind of fell into caring for sick people and took to it. She is not credentialed, but tells me that she is working on getting bonded and a state certification. I introduced her to my husband at church last week and he thought she was nice. I did explain to him that I was looking into finding a caregiver for me to come in and relieve me and he seemed to understand why I needed that and was okay with it. So, I think I better get to it. It's just something I keep putting off because it's expensive and I will have to adjust to a stranger in the house, etc. I'm sure you all know all of these excuses. I will definitely get more serious about it as winter looms closer. Seems like everyday there's another "fire drill" that I have to attend to and pay for - I get so tired of constant responsibility with nothing to look forward to but more of the same. Guess I really do need a vacation; wish I could run away from home.
My kids insisted I get someone to give me a break and I am so glad I did. She comes 2 to 3 days a week (my schedule) for 3 or 4 hours each time. I go to lunch with friends, run errands, or just sit and read a book. I find that if we have company and I cancel the aide I am really stressed by the end of the week.
Oh, how I wish I could give in and do what you guys are doing..... I'm so afraid of everything to do with having a stranger here. I have been told by so many of you and I keep saying I'm going to do it, but I haven't. My kids are worried about me. I'm worried about me. I know I need to get away for a few hours a week, and I know I need help with the house. Just this week I have had so many things to take care of concerning the house that I couldn't think straight anymore and yesterday literally could not do a thing all day. I don't feel this way often, most times I'm just fine. I just don't have the nerve to begin the process. I'm really rather ashamed to say that....
Bev, I hear ya Sista! I normally can handle pretty much everything, or so I thought, but last week I had a mini meltdown. I cried more than anything, but I hid it well. No one really knew about it but my daughters knew something was wrong. My older daughter has been telling me for some time now that I need to get someone to help me. Well my younger daughter told me this past weekend & she told me that I have been using excuses not to. So now I am looking into it. I know that for my sanity I NEED to get away for even a few hours a week & I can’t always depend on my daughters or an occasional friend who will come & sit with him. I know it will take an adjustment period, but I am willing to go through that.
I have tried every way I know how to get this message across. I did the Caregiving alone for years--March 1988 thru Sept. 2006, during DHs Mental IIlness, when he was still more functional, but when he was Dxd with VaD and his Hospital Discharge Plan was being sorted out, the proposal put on the table was to place him. I told them, "I can't do his care alone anymore, but with help I can and I believe the best place for him is at home." He came home and I began having in home help. It is now June 2011 and we are working on placement because of his declines and my own--but we have had nearly 5 more years that I am positive we wouldn't have had, without the help.
I will say again: When dealing with the Dementias, the Caregiver is required to shoulder all the original work of their role in the marrige and operation of the household; plus all the work and responsibilities their spouse fulfilled; plus all the work generated to care for their spouse--medically, legally, personally, and every other way. NO ONE PERSON CAN DO ALL THAT ON A SUSTAINED BASIS. Just because you are able to do dishes and run laundry, mop floors and mow grass is not the point. Anyone can do those things. Your focus must be the things ONLY you can do. Beyond that, you MUST take care of yourself--take respite time frequently. NONE OF US ARE SUPER HEROES.
Now, I am going to ask you, "What are you proving by trying to do the impossible? And who are you trying to prove it to?" Your spouse is not going to remember whether you showered him; nor who cleaned up his wet bed. He will suffer if you end up in the hospital with a heart attack and he ends up placed with only strangers caring for him, unexpectedly. There is not one issue of having helpers come in that can't be worked out and adjusted to. In all the grief we face and fight our way through---the driving issue; aggression; incontinence; just to name a few---it is a mystery to me that getting help in and exercising a little self preservation is such a difficult thing to deal with. Getting help is the most intelligent, loving thing you can do to insure that you can provide the best care possible for your spouse. They deserve the best possible care we can provide. That can't come from someone who is worn out, burnt out, frustrated, and possibly injured or ill.
Am I the only one worried about how to pay for this? Right now we do have some resources, but with all the expense involved with this disease and the unknown factor of how long it will go on, I'm frankly worried about running out of money. We will be meeting with a financial advisor next week and I have confided in him that I am concerned about paying for dh's care - that's the first priority. Hopefully, he'll have a good plan for us as my brain is pretty much jello these days and I cannot manage the finances and come up with a plan on my own. Oh how I miss the days of being a "princess." :-)
Bev, carosi if so right about needing to have some respite however long we can manage. i was like you and cringed everytime i thought of interviewing an agency to come to sit with DH. the process is not overwhelming and most agency will work with the hrs and needs you want. start out with a min amount of hrs once/twice a week and see how it goes. i remember the first day out alone i couldnt function i had no idea what i wanted to do! like a bird out of a gilded cage:) all this entails really is making sure you have a closet or bedroom to lock up valuables put a deadbolt on it, and voila. most agency workers are bonded and background checks done. once you find the right person your life will radically change for the better getting out for a few hrs frees the soul and replenishes the spirit and body. it returns you to normal for a few hrs. now you know we arent going to let it slide that you are having difficultiy making this move, right????? we will be waiting on updates on how you are working to get this done. anyone else who is on the fence about some help too. ! its just too important to let it slide any longer. please get yellow pages out and call a couple agencys and interview next week!! it takes about an hr once they come out, nothing to drastic. if agencies arent available start checking around at a local nursing home or church organizations, they ussually have workers who are wanting to make extra money and will find some time to sit for you too. where there is a will , there is a way.ALLof us feel better knowing our friends finally made the difficult decision to do something positive for us!
I completely agree with you Carosi! Our problem was with Lynn's aggression and rage. He would not allow outside help, and the agencies were VERY blunt that they would not subject their employees to his behaviors. Once he was enrolled in Medicaid they did offer us help with an aid and someone to help with the housework, but he refused to allow them to help with his care. I could not leave as he threw a fit and they too said they would not stay with him when he was that volatile. *sigh
It was a very difficult situation and very trying on me. After I had yet another TIA, the social worker came up with a plan that they would pay a family member to stay with Lynn so I could get out of the house. The training was very simple. He had a close bond to my sister, so she was the logical choice. He of course would not let her help with his daily care needs, but it was a HUGE relief to get some time outside the house alone.
I do know our situation was not the norm, and I too strongly urge everyone to get help in as soon as possible. I often wonder if I had not been so stubborn in the beginning, if I hadn't had “Superwoman syndrome" if I had asked for help earlier, if Lynn would have been more receptive to it. I will never know the answer..... But I do believe when he was more with it, he would have accepted the help if I stressed it was for me. Caring for Lynn alone truly almost killed me.... learn from my massive mistake, get help in sooner than later, as later may be too late.
Even if agency employees are bonded they are only bonded for a certain amount and if things go missing ( like I discovered my mother's jewelery and her mink hat, not to mention clothes damaged by their employees trying on her clothes ( I found their hair in her knits..yuk)..unless you know which employee was on the job at the time...they won't make good on it. We did luck out with one, the guy was stupid enough to make 900 calls on our phone and the bill was out of sight...for that we got reimbursed because there were dates and times to prove who was on...but unless you are there to prove things as it happens good luck. I hope I don't get to the point I need constant caregivers in my house...I hated the experience when we had to deal with it for my parents.
Also, background checks may only involve the local environment...Try for FBI or some international check...some crimes do not get reported to the local police dept...we found that too...and this person was with an agency...
I guess if we didn't have bad luck we would have had no luck...got rid of the agency and had private hires...some were exceptional but get one bad apple in the mix and they can make life miserable and the good ones will quit...
When the day comes I am forced to face the caregiver issues in addition to the locked rooms, I am going to probably rent a climate controlled storage unit and put other things there..way out of sight..I will not be happy about this but by heaven I will not be ripped off again.
Okay folks, tomorrow might be a good day or a bad day. The RN I mentioned in my first post is coming by tomorrow with the woman he thinks will be a good fit with my DH. She is a CNA and does have other clients. I don't know if they have any form of dementia but from what the RN has told me everyone likes her. The RN's idea is to stop by as if they were in the area and decided to check to see if we need anything. DH hasn't mentioned anything since the negative remarks in my first post so I am hoping he has forgotten and doesn't start up again when the people are here or when they leave. I will ask like my nieces husband did when he had a heart attack.....If you are religous say a prayer if not keep your fingers crossed!!!!!
Paying for home care IS a problem and a lot of people won't recognize that becaUse they have insurance to pay for part of it, or family to help, etc. I followed advice here and started getting someone once a week for a few hours. Agreed that one should lock up valuables but some of the problems Mimi had wouldn't occur if you were having someone into your home and sometimes coming back early, etc.
You worried me Emily when you said you were going to go to a financial planner. NO! just like you wouldn't go to a marriage counselor to fix his behavior problems. Go to an ELDER LAW lawyer and find out how to set things up. Usually one consult is free or maybe $200 or so. Apparently about eight out of ten people in the long term care wings of nursing homes are on Medicaid so get used to it: you may well have to go there eventually, middle class .."comfortably well off" though you be.
Certainly it's true that paying for them to be at home is cheaper than private pay in an ALF, which takes neither Medicare or Medicaid, and you can deduct all your home health expenses, both aide and depends, on your taxes. But if you do eventually have to put him in a nursing home, know that they usually run $8000 t $10000 a month. A lot of our spouses are Veterans so that helps. My husband's hip broke while he was still at home. He went to the hospital but the ortho refused to operate. He was too fragile (and in stage seven). He went to a nursing home but MEDICARE DIDN'T PAY FOR THAT since without an operation it wasn't considered a qualifying Event. I had to hand them my Visa for $9000 for the first month of nursing home stay. There aren't many of us wHo can afford that and hope to live AFTER. so I immediately initiated a Medicaid application. He died before I got their response.
Well, The RN and the CNA didn't make it yesterday so I hope you will continue to pray and/or keep your fingers crossed for next Friday the 1st of July. DH has never mentioned it since the first post and I am guessing he has forgotten all about it. I just hope he doesn't get all riled up again next week.
briegull* You answered something I had been thinking about and that is if the cost of home help is tax deductible. Thanks.
Marilyn reminded me that if you're not old enough for medicare you can't do the spend down thing, without terrible tax consequences, so scratch that! And a lot of us, including me, couldn't look forward to help from the VA.
My dh and I already have a Financial Planner and an Elder Law Attorney who has set up all of our legal documents. Do you think the attorney might be able to help me with setting up medicare or medicaid resources? My ELA is big on Geriatric Care Managers (a great big ouch in the pocketbook) and I think that's who he will direct me to to find at home help (I fired the last one after an $1800 bill for 2 visits). I think I can probably round someone up myself if I put my head to it, but I do want the Financial Planner to help me figure out where the dollars will come from in our estate. It sounds like you know something about this that I don't, so if you could tell me what I need to be asking my ELA, that would be wonderful.
Try to get the ELA to focus on how to prepare for Medicaid, not on what to do right now for care. That, you can get better advice on HERE. We're all Geriatric Care Managers if you look at it that way. My hairdresser used the company who provided the aides to come out, for his mother, and they're fine and nearby.
Everyone, go to elderlawanswers.com and read it and read it. That will give you a lot of good ideas.
Excellent advice, briegull* for that site. I hooked up with a medicaid consultant from my state and asked a lot of questions on line; then had an hour's consultation by phone for almost nothing - and made 5 pages of notes while on the phone. Worth every penny of it and then some. I still read it lots.