Yes. I don't have a suggestion, but I do think about this all the time--how to make help accessible to the zillions of people who need it? How can we expand these networks, resources, and financial access to care?
I think it's going to be one-on-one when the opportunity arises. It did with me just before Christmas when I dropped DH off at DC. I rarely see any of the caregivers who have LO's at the DC because most are picked up by bus. This day, I did see a wife who brought her husband. She left ahead of me and when I got to the lobby she was sitting on a couch crying - big heavy crying. I sat down beside her and pulled her into my arms and the crying was even more. We sat there for several minutes until she was calmer and she started talking and talking and talking. I won't go into detail but her DH was being abusive and she had no family or other support. Her/his doctor evidently was of no help. I told her to talk to the case worker that has to evaluate the DC patients each month and find out what support she might qualify for here. There isn't much available in our area, but from what she said and my observations of her husband, he needs to be placed. They most probably will qualify or medicaid, so I referred her to a medicaid consultant I know who will not charge her for consultation. I never saw her again, but saw her husband 2-3 times over the holidays - now he isn't there at all. I don't even know her name, but I truly hope something I said or information I gave her, ignited her to push and push until she got some help.
Vickie..What a kind and caring soul you are. I am just wondering if you could ask the people at the DC about the lady and if you are so incline give them permission to call you if she wants to talk or guidance. I know you probably have enough on your plate already. Did you tell her about this place??
I did tell her about this site, but she doesn't use a computer. At this point, Judith, I don't have the energy to take on anything/anyone else. If she makes the move and asks the DC about me, that's fine and I'll do what I can for her. I do intend to ask my case worker about her when she calls at the end of this month. We most likely have the same one. Not much variety around here!
Great blog. In all honesty the more people that know about this site or come across it, the more new people will get some help because coming here does help most people.
We could draw up a sheet sized poster that people here might print on their PC or just hand write which could be pinned on hospital and nursing home or community center bulletin boards. Something roughly like "Dementia caregiver? You are not alone. Resources and caregiver bulletin boards offer support and solutions. Alzheimerspouse.com"
Joan Your caring for all of "us" and those who need help is heartwarming. Vickie. Your experience reminded me of a chance I had last week to help, albeit in a small way . I was in a very crowded supermarket with huge lines. I suddenly heard a loud unintelligible yell come from the man behind me. His wife was calmly quieting him down and held his arm lovingly. I saw the blank look on his face and his confusion. And..instinctively I knew. I told her to go ahead that I understood. She looked at me so thankfully and winked as she moved him forward for a quicker exit. I held back tears as I felt both her pain and relief. If there is anything to be gained from the despair of AD , it must be compassion for others.
Emily, I have been thinking about the question you posted for 7 1/2 years (since Steve was dx). I think the answer must be that the government must do more. Most of us who have been dementia caregivers don't have the physical/emotional strength to take on mentoring or advocating. Just surviving the caregiving experience and grieving and carving out a new life "after" are full-time jobs. From what I've seen, many disassociate themselves (understandably) from the cause once their caregiving days are over. It's a shame, because we could be the most effective agents for change. Of course, there are exceptions--like Betty Weiss (who posts as Bettyhere) who remain connected and try to educate others--but it seems they are few. To be truthful--as much as I see the need to help others in the trenches, it is tempting to think of a time in the future when I can remove all traces of AD from my life. Will I do that--remains to be seen.
Yes Marilyn, I understand the temptation. I don't think, though, that I could or even would remove all traces. It feels like something I need to always remember and carry forward. (Somehow I'm reminded of the movie Eternal Sunshine of the Spotless Mind, and what a mistake it seemed to erase experiences from your memory bank in order to live more carefree.)
Joan, I agree, we should all try and "pay it forward" because most of us have found resources or learned things associated with caregiving the hard way. I remember how lost and afraid I felt when dh was initially dx'd. The dr didn't even tell us the dx, offered no resources or support and basically said goodbye, you'll manage. Even when I reached out to the person leading the local alzheimers support group, she said she didn't think I should join at that time because most caregivers attending the group had family members much further advanced with the disease and she didn't want me to be afraid because of their experiences.
Having no resources initially was in some ways a blessing - it forced me to become educated about dh's illness, and research what support might be available to us. That's how I found your site. In a strange way it helped me become empowered and certainly able to knowledgeably speak with the professional we saw and even challenge them when necessary.
I compiled a list of resources including memory care centers to books and websites and gave it to the geriatric care manager I hired early on. I encouraged her to provide the information as potential resources for the families she was dealing with and offered speak wth anyone who had an interest i doing so. I continue to update and share the list with her when appropriate. I've not heard from any one but I am hopeful at least the list is a starting point for families who are dealing with this disease.
I think it should start at the dx. It would of helped us so much to have been given a sheet of paper with names and contact numbers. Alz Asso local number, support groups in the area numbers, web sites, etc. We were given nothing, dx and sent on our way. Do doctors do that with cancer patients? If so that would need to change too. I understand that with HIPA they can't give out our names. But no reason they can't give out something to the caregiver to be!
I still do not know what we have to offer in our town. I don't even care now. I just take it one day at a time. And with the blessing of all of you I am doing ok. The one big thing that is hard now is DD. I don't even know how many teacher meetings I have missed because of DH. Oh well we do what we can and keep going.
I spoke to my neighbor again today. She said that just talking to me and being allowed to vent last Saturday made her feel better and less hopeless. I made a list of resources for her. She is going to the doctor in 2 weeks - the doctor she and her husband have been going to for years. They haven't seen him in 6 months, which is when her husband's health and her stress and health have taken the biggest hits. She's going to tell him everything, including how stressed and depressed she is. She's lost a lot of weight that she couldn't afford to lose. She said that she will bring my list to him, and see what he recommends.
What really made me angry was her husband's response to help. He does NOT have dementia, but he insists that he can shower himself ( He fell again last week, and she had to call the paramedics to pick him up), and doesn't want help from anyone but her. Sid's CNA was here showering Sid this morning, and he was all ready to go over there and make arrangements to take her husband on as a client. But the husband said NO. IMHO, that's being selfish on his part, because he has the mental capacity to KNOW that he's putting his wife in danger by insisting she be his only helper. I urged her to tell the doctor that she can't do it, and to ask the doctor to tell the husband he has no choice but to accept outside help.
I agree with Blue. Doctors who diagnose patients with chronic illnesses that require caregiving should be informed of the assistance that is available, and provide the caregiver with names and contact numbers.
I started in October with a woman coming in to help "clean" once a week for for 3 or 4 hours. A few times it was 5 hours when I had to drive our retarded son from and back to his residential facility at Christmas. So far that is working well though I know I will need more help in the future.
Now I know I have to set up something for respite. I talked to someone at our local hospital (case manager) about it and she just said, well you can't just take him somewhere for respite and gave me names of home care organizations. I called one and she said it would have to be a live-in.
Today we saw the nurologist and I asked him about respite and he said he thought it should be at a facility so there would be a team and not just one person to handle problems. He has no idea of the places we could try in the area but said he would try to find out. I told him I was surprised that the hospital case manager had no information. Another case of the "professionals" not knowing how to help us.
I asked the DC director about the lady and her DH whom I talked to before Christmas when she was having such a rough time. She told the director what I had done and said to her and how much help I had been. Her DH is now in the hospital and will be placed in a nursing home upon discharge. She had no idea how to go about doing this until I told her and told her who to contact. They qualify for medicaid, which I thought at the time, was so. It's a good feeling to think you have helped someone - no matter how small it is.
Do I see the beginning of wings coming off your back? Great job Vickie. Makes you feel good as it should. You are an example to all of us how just one small thing can result in action and help for someone.
Blue and Joan, I couldn't agree with you more. My article due out in a few months in the journal, Dementia, is entitled "Empowering Alzheimer's Patients and Caregivers." I suggest that at or very soon after diagnosis, doctors should provide a handout to the patient and caregiver that briefly describes the stages of Alzheimer's, lists contact numbers for support groups,local resources, etc. Providing that information should be part of the doctor's job in caring for both the patient and caregiver! And, although cut from the forthcoming article, this site should be right at the top of the list of resources!!
About a year ago I moved from my home state of idaho to SE Washington state. My AD wife (DX in '99) was where I could no longer care for her. We moved to be with our oldest daughter, who shares the care giving now. But when I got here the first thing I did was to seek out support groups. I found two and I attend regularly. I don't have much of a social life here where I don't know many people, and the support groups are my social life. dave
I made a couple attempts last week to find our what is available for respite in this area. I called 2 life care communities and got an answer from one. I went for a visit and it seemes nice but I have nothing to compare it to. They are all "private pay" but he wouldn't be elegible for help anyway. At this time I am trying to fine something for respite care. That place is $295 per day for a shared room or $352 for private. I will call some others this week. Most will take him for respite as long as they have a bed.
I also talked to a home help agency and they are coming to our home this Tuesday to do an assesment. They charge $23 per hour or if someone is here 24 hrs a day for respite, then 8 of the hours would be $18 / hr. I will keep working on this.
It gives me a lift just to be doing some looking rather than just sit a wish I knew what to do.
Mary, please make sure you truly understand what a home help agency will charge you. I have had live-in help for DH since Dec 2008. For live-in they typically charge a daily fee (not hourly) which may be less than having an aide on a hourly basis. For example, if I hire an aide hourly, the fee is anywhere from $20-$25/hour no matter how few/many hours. If I hire a live-in the fee ranges from $195-$240/day depending on the agency. Most live-ins from an agency require 8 hours of uninterrupted sleep and up to 2 hours break/day. I learned the hard way - do you need 24 hour help or a live-in? There is a big difference. For 24 hour coverage you will more than likely have 2 aides doing 12 hour shifts at $20-$23/hr and neither of them should be sleeping because you are paying for 24 hour coverage. If you are hiring a live-in then the aide should be on duty a minimum of 14 hours per day. The problems arise when your LO is up at night when the aide is supposed to be sleeping or when the aide wants to take a break outside the home - who will cover and take care of the LO when the aide is not on duty??
I am in NJ and have learned many things the hard way when it comes to hiring hone health agencies.
LFL, Thanks for the information. I will ask more questions when the person comes on Tuesday. At the beginning I only want respite care but it might develop into more as time goes by. DH mostly stays in bed at night and my daughter lives here, but she has a full time job and it is 8:30 two nights a week.
Right now I have a person who is not with an agency come in once a week for 3 to 4 hours, depending on what I have to do. Thinking I will add another day soon just to do errands or go visit my friends in NJ.
I will think about whether I need full coverage or someone who would sleep. I heard a talk by this group last weekand was impressed.
MaryinPA. I see you have someone come in a few hours and are going to increase it. How are you paying for this service if they are not an agency. Have you used a CPA to set up pay and all that tax stuff? I have a couple of gals I am trying out and so far I like them a great deal... I have tried them for 4 hours 3 times a week...and want to see about getting payroll going for them. I am loathe to have an agency having a terrible experience with agencies when we had them for my parents. Truth be told, I don't trust them, there was stealing, people did not show up and the agency left us holding the bag.. I would rather have ladies I know and feel comfortable with but want to make sure I am on the right side of the law and IRS, Any suggestions on this, what do I need to look out for?
I have someone who works for us 10 hours a week and for my husband's aunt 8 hours a week. She does also work some for other people. She has some awareness of the law and feels very strongly that she is an independent contractor, she does not want taxes taken out. I worry a little we will get into trouble when my husband's aunt goes on Medicaid. Payroll looks pretty complicated (http://www.sba.gov/content/10-steps-setting-payroll-system)--I would probably go either to the accountant who does our taxes or to the one who does the aunt's taxes.
pamsc, she may consider herself an independent contractor but does the IRS? Does she have a professional certification (RN, CNA, LPN?) If so she might be considered an independent contractor but keep in mind you will be the one who will be responsible for back taxes, etc.
I would definitely have an accountant set up a payroll system for you should you go that route. It does add to the costs because you have to pay the 7.65% federal tax, any applicable state tax, including unemployment insurance, costs for the accountant. I would also speak to your home owners insurance company and see if your policy covers someone working in your home...you may need to have a higher insurance policy and/or be abe to get a workers comp rider on your exisiting policy.
Mimi, the person I have now is strictly "under the table". I hope the IRS isn't going to get excited about 4 hours a week. Anyone else I add will be from an agency. The person I have now came reccomended by a member of my local support group. Alice cared for her mother for several years until she died. She is not nurse or any professional, just someone to stay with DH so he doesn't wander off or decide to cook.She does some light housekeeping while she is here.
The Agency I' m looking at right now is "Home Instead". They are strictly non-medical, though they will give pills that are arranged in daily pill cases. They take care of all the withholding and tax stuff.
The woman from Home Instead came today to assess what we want, to meet DH and see the house. By the time we finished I had signed up for someone to come on Tuesdays. She says I should do something for ME, not just the grocery shopping. I can't even imagine what I will do with the time to do what I want to. Guess I will think of something. I haven't even been to the big mall in over a year. Maybe I will do that one day. Oh, I know!! I have a season pass to Longwood Gardens that I have only used twice. It's only 12 miles from my house.
This is wonderful MaryinPA!! You know, when I had my one day a week respite, I often drove the 3 and a half hours to town, and that only left 6 and a half to cruise, the driving really cut in to it. The days that I just went to a local beach or walk here, were the best. Your Longwood Gardens sound great. Then treat yourself to lunch, and enjoy every moment. You will love it.
MaryinPA--Longwood Gardens is one of my favorite places on earth. DH and I went dozens of times, I've been back with my brother and SIL several times without him. I envy you living so close to it.
mary, the first times out alone you may find it hard to find things that interest you being that you havent had respite in a while. after you adjust and see that DH is cared for and hes ok you will find lots of good stuff you want to do. i think most of us have an adjustment period ourselves with finally getting help! good luck and enjoy divvi
Thanks for the encouragement. My DD in MD also said to get my nails done! I have never done that in my whole 75 years of life.
I'm also curious about how the aide is going to get him into the shower. That should be interesting, since he doesn't want me to help. The person said the aides are trained to make the patient comfortable. We'll see.