Fellow travelers know that one of my daughters became a dementia care specialist because of her dad, and my experiences. She gives lectures to employees of her company and is stressing the need for for more care giver support. She is focusing on the grief we feel as we lose our still living spouses. Other institutions are now seeking her help. Please tell me what you want her to know and share. I do believe our message is starting to become an issue.
The simple fact is that caregivers cannot do it all. Look at my Help Wanted Blog. It was written in jest to give everyone a chuckle, but the job description is accurate. I probably even left out some duties.
There is a thread here about someone using some kind of special sheet to lift her husband and change the bed at the same time. It is insane to expect a single caregiver to do that kind of work.
Unless you have money or very willing relatives, you are left to do all of the work, including heavy lifting, all by yourself. Bathing, changing, cleaning up poop, giving medications, staying up all night when they are agitated, at risk of wandering. No one person can do it.
Caregivers don't need a pat on the back for support. They need someone to fund in home help. Government funds in this State are frozen for that type of help. I don't know where the money should come from, but in my opinion, that is the type of help that is desperately needed.
If you are caring for a parent who does not live with you, and you have a job, how are you supposed to provide them with the care and supervision they need? If you are living with a spouse who needs heavy physical care, how are you supposed to do it alone? My 89 year old neighbor is currently caring for her 90 year old diabetic, wheelchair bound (due to a stroke) husband. He also has the beginnings of dementia.
In home help. Specific chore help--mowing, snow removal, window/screen change out(seasonal), as examples. True respite coverage--not just for Caregiver's appointments, but for R&R--REGULARLY, FREQUENTLY.
Also, little things--a casserole for supper, take LO for a walk, come for a coffee visit, or take LO for a walk.
Any help offered needs to be reliable -- doesn't have to be a huge thing or costly.
Here is the thing about this insidious disease..it starts out small, as a rule of thumb..small things and before , the caregiver knows what the issue really is, we have already started to take on more and more of the responsibility around the house. First it might be having to deal with the remote that they can't seem to figure out but all else remains ok, they drive, do not get lost etc..then we start noticing maybe the bills are not paid as quickly as once before so we start to take that over, next we maybe be the ones organizing the work that needs done on the house...screens need replacement or stain the deck...whatever it might be..You get the picture...we might even go so far as correcting the story of an event in which the LO gets the facts wrong. Finally it gets so intense we start to ask of our friends " do you notice anything different aboutXXXXX?" and most often they won't say anything even though they do see changes...so we find ourselves becoming more and more frustrated as the days go by..and FINALLY WE GET THE DOCTORS GOING..EVEN THEY DON'T SAY ANYTHING TO US THANKS TO HIPA...So by the time we get a DX we are already frustrated, tired and with each new day we HOPE things will stay stable but know they won't.. Meds..we have to set that out...before long we have to stay there and watch that they take them all when they are supposed to, then there is the issue of getting them to cooperate about changing clothes, taking showers...and on and on and on..
Of course they will say " can I help you" until it nearly drives you mad because the things you need help with he or she can't do for one reason or another...So we are now on the hunt for help..and none is free, or very little. If we are lucky, our friends are still around ( but don't bet on it) to help out now and then...sometimes even when we ask for the help they are too busy....
Getting a person to stay with our lo around my part of the world costs at least 22 bucks an hour..so what kind of break from it do we get..not much..if we are lucky we can make a hair appointment, doctor appointment of even get the car in for tune up...
I would suggest your daughter sit in on some ALZ support meetings in her area or just read these threads...she can get a real good idea of what we face or will face as our LO sinks farther into this "effing" disease...as we try our damnedest not to go along and lose ourselves.
What kinds of things do caregivers lose? We lose everything..This disease is not called the Long Good Bye without reason. We miss adult conversation, we miss being able to be a couple, we miss being with groups of people who now don't include us or at least not very ofter, we miss time to read or go shopping or go on trips But most of all our dreams are up in black smoke. With each change, the birth date no longer recalled, the anniversary that is now forgotten, the very face of the person he or she looks at is no longer known because their mind is now back before they first met, those are just some of the things we mourn while they are still with us. WE no longer have a spouse , we have big baby we can hardly manage. WE are married but we aren't. Just as our loved one is caught between two worlds so are we. While other think about the trip to see the kids and grandkids, or a trip to the mountains, or a trip to Hawaii or to Europe, we find ourselve thinking about how we are going to survive, we find ourselves planning our savings for the nursing home we know we will need sooner or later for our LO and we find ourselves planning the funerals for our LO even before they are on hospice care... We hope we live through this and still have stamina to develop a new future for ourselves. We are widows or widowers long before our LO is gone..
The best education I think your daughter could have is to take on the tasks as a respite provider..nothing like first hand experience to gain a real understanding of how hard the work is if nothing else. We are sick of people ( not saying your daughter is one of them) who never walked the walk trying to tell us what and how to deal with this disease.
I might sound hard here. I have just had 2 straight days out of hell itself around here with major events in the house that have no solution until Tuesday at the earliest, and dealing with the never ending asked and re- asked questions until I am bout ready to go out of my own mind.
bluedaze, i think maybe copy the thread 'things i wish i had known' and let her read that thread. it has significant points and lots of specifics that would be important to newbies. divvi
Another issue is that family caregivers need formal training. This shouldn't be a "do it yourself" or "on the job training" situation. Professional caregivers are trained, we have to fend for ourselves--I see this as a huge flaw in our current dementia care system/practices. The lack of training ends up causing both the caregiver and the person with dementia extra grief and stress. If there are parenting classes for expectant parents, why aren't there educational courses for people in our shoes? This is at least as challenging. Support groups are great in terms of sharing experiences and dealing with grief, but they are only a few hours a month.
The very best of the agency trained and supplied caregivers can let you down. Last week, our part tine person called me while I was getting my hair cut to tell me that the school nurse from her son's high school had just called to say that her teen's knee was very swollen. Our caregiver declared an emergency and left my husband alone! I raced home with wet hair. At $22.00 an hour I cannot obtain the kind of coverage that we need.
Brooke that was unforgivable of the agency to have your husband left alone. At the very least they should have sent any warm body from the home office to at least sit with your husband.
Brooke--call them and chew them up. And if their emnployee didn't report it to them so they could cover it--they'll deal with her. I once had a double change out, when a.m.caregiver was scheduled to leave and the next to take ovedr was a no show, the replacement (told there were dogs and cats)decided she was allergic, so #3 came. But DH was never left alone.
How wonderful that your daughter is so involved. Gives me a bit of hope!
I agree with everything above.... and I have to agree that for me at least, education, support and funding would have been big helps to me. To me support groups are a joke. Sure they might work and offer wonderful support, but I couldn't go to them! I HAD to stay home with Lynn, so how was I suppose to go to the meeting? Perhaps it is too much to ask, but if "they" are going to offer support, how about also offering care for our spouses so that we can go! I know they offer child care at many support functions, why not adult care? The same is true with educational classes. They did have some informational seminars in our area, but I could not go. You would think if these are FOR the caregiver, they would KNOW we can't attend them as we ARE caregiving......I wonder where their heads are?
Even tho I have nothing to add because it has been said so good above, I am glad your daughter is trying to bring more attention to this disease and to the caregivers.
Nikki I agree with you about not being able to go to support groups or anything else. Where is the help? We need warm, fuzzy, humanbeings just like our loved one does. We need someone to be here for us, so we can be the caregiver that our loved one deserves. I know I am not nearly the person I should be when I am so stressed and at my wits end. Even if people that want to help, or family that says they want to help but can't stand to see how their family member is changing, they sure could help the caregiver in ways other than with just the family member. Mimi said it best......
I hope this really works out for your daughter and the issues are addressed. I am sure any help will be appreciated especially if hands on experience is given not just book learning. Hope all have a great nite.....
Nikki, mammie and anyone else--In my state (and others) the Alzheimer's Association offers support groups for Early Stage people with dementia and their care partners. This started several years ago and has continued. Everyone attends the meeting for the first 1/2 hour and then they are broken up into two seperate groups. Besides giving the care partners a chance to attend, this setup allows the people with dementia to form bonds with others like themselves. I realize it's too late for you both to attend an Early Stage group, but you should contact your local association and push them to start this setup for others. Another thing that is available here, some support groups are held at adult day/assisted living facilites and they offer respite care (for a fee) during the group.
Each Alz Association chapter operates differently and I think more of you who feel underserved by your local chapter need to make some noise!!!!!!!!!!!! You might be instrumental in improving things for the multitudes of caregivers coming along in the future.
P. S. Another thing our Association does is a phone-in support group called Connected Conversations. It is once a month--not as good as in person--but at least it gives caregivers who can't leave the house an outlet. Tell your chapter to contact the Maryland Alz Association to get details, if they don't offer it.
I go to 2 support groups. One, mostly women, takes place in the early afternoon, while my wife is still at adult day care. The other, for men only, is in the late afternoon, but the day care center provides respite care during the session, and also provides dinner (pizza) for the men and those in the care center.
Mimi, you are so right. It starts out small and slowly we take on more and more responsibility and loose our own identity. I have arrived at the point where DH no longer attends his 3 morning a week program, we no longer go to church or out with friends. I cannot get my hair cut, have a mammogram, or go to my book club without having someone in to stay with DH. He constantly complains of aches and pains and nothing else. He has started giving things away. I have to watch that because he wants to give my things, like books, magazines or packs of cards, away. No friends call anymore. I rarely see my neighbors. I sometimes feel as if I am in prison. The only thing we do is take him to doctors, blood work, tests on legs and nerves and physical therapy. Next week he goes to a psychiatrist for cognition testing and back to the back doctor. What is there to look forward to.
Maryd, I so understand what you are feeling. I am a Christian and I am wondering what is there to look forward to...... the love of my life dying before my eyes, family ........ most of which are in name only never coming around, lonliness, heartache,......... need I go on. I wonder also most of the time between tears and horrible thoughts and words. Not only has my dh's life changed, it has changed me and sorry to say ,,,,,, not for the good. One positive thing is friends, be it cyber friends or warm fuzzy friends, we do have more of them......
The lack of a robust personal support system as well as community resources for late stage 6 early onset is leading me to placement at the end of the month. This is earlier than planned.
It will ultimately lead into Medicaid, when a better system in general might have kept him at home.
When seeking out support groups, also check with the Alzheimer's Foundation, a totally different organization and completely unrelated to the Alzheimer's Association. When I began looking for EOAD groups for my wife, the Alzheimer's Association had no such groups here on Long Island. I then checked the Long Island Alzheimer's Foundation and they had an early-to-moderate group that met in the early afternoon ... one group for those with early/moderate AD, and one for their spouse caregivers, each led by a qualified social worker. My wife and I have attended our respective groups for nearly 2 years now and those in the spouse caregiver group have formed very close bonds.
Dog please make sure to talk to an eldercare lawyer before you commit him. Have a consultation with them and find out what your options are. It will save you so much! I've just one thru the whole Medicaid process and when I have all the facts together I will post about it
Some of you who are now widows/widowers might want to think about starting a support group for spouses, in your area. I contacted the local Alzheimer Association in my area and they have a support group for everyone that meets once a month at a local Church - I had been to that one a couple times but it was not a good fit for me.
I had decided to volunteer but did not want to work in the office, filing papers etc. so we discussed what I would like to do and I told her I would like to help start a support group for Spouses dealing with a Spouse with dementia. She was very enthusiastic about doing that and armed me with a notebook full of information about facilitating a support group and I filled out the information for a background check and she pretty well let me set the dates, times etc. She sits in during the meeting and chimes in occasionally. The first meeting we had 3 and yesterday we had 8 for our second meeting. I am hoping to get as many as 15 coming of a pretty regular basis. The ones at the first meeting were there again yesterday.