how to involve family members to avoid caregiver burnout,since my wife was diagnosed with dementia and alzheimers it was like we announced she had a contagious disease
Welcome to the group kraj. It is a bit late, but someone will be along who might have some answers for you.
I'm not going to be much help with your question. Frankly there is very little family and I've been lucky with what little there is. I'm the youngest child in my generation and the only one left. And my husband was born in Hungary, so he has no family in the US.
But I didn't want you to go overnight with no response at all.
Welcome Kraj, my DH was diagnosed in June but we knew from the first visit in April that unless they found a tumor or something similar in the testing phase, we were looking at AD. As a result, I wanted our family to know so they could get prepared or at least understand. The results have been not as I expected. The most support and understanding I have had has been through this website and through my local support group. Brothers and sisters live too far away (they seem to be sympathetic but are 1500 miles away). Our son who lives close-by has his own family and young children (school, soccer, camp) and really doesn't have time to stop by or call his father (except to say "happy birthday") so we are on our own. I know I won't be able (when the time comes) to ask them to "sit" while I get time on my own. I guess in my dreams I always thought it would be different.
I think we have to find other ways to avoid the caregiver burnout. First thing is to take one day at a time and avoid the depression that comes from thinking about the future. When I first started reading the conversations on this website, I got very depressed, felt sorry for out future and cried thinking about what we have to go through. Then I had a "talk with myself" and got over it. Now reading the conversations I have learned how to avoid some of the pitfalls and how to put one foot in front of the other. The information here has really been invaluable! I have learned there is a lot of help out there and through this website I am starting to learn of all the possibilities (some government and some private) for the "when the time comes" I will need to access it.
kraj@1947 - Can you afford to pay someone to visit with your spouse? You can contact the local Alzheimer's group to see if they have suggestions. Getting away for a few hours at least sounds like a top priority for you and if family isn't wanting that you just have to give up on them.
Kraj, we all know too well the contagious disease syndrome here. those who have family and friends who willingly lend a helping hand are far and few inbetween. our kids with family as you say dont have time in busy schedules to visit or sit. its up to us to start early and try to work a way around the lack of support and get our own support system in place early on. ie-Adult daycare in your area is a good choice, and or hired agencies that can provide you with as little or as much time per hr you need. in our area i pay 17dol an hr for a qualified sitter who does lite housekeeping as well as tend to my ad husband, so i feel its a worthy investment at min one day/wk. you need some time for yourself or you will certainly burnout soon. its a daunting job caring for a spouses every need on top of daily life. welcome to the group, i hope you find answers to your specific needs -divvi
Welcome to my website. Be sure to check out all of the helpful informaton on the home page - www.thealzheimerspouse.com. Although I am thrilled beyond words how large the site has grown, it is making it a bit more difficult for me to research older topics on the boards for newer members. I know your topic has been discussed many times throughout the various discussions. I just can't find them. Our members have lamented the problem of family members in denial and how easy it is for them to turn their backs on the problem. Know that your situation is all too common. I am going to amend your discussion title a bit to "caregiver burnout/how to involve family to help".
If you are suffering burnout now, you need help now, and cannot wait to try to convince your family to help. Call the Alzheimer's Association - 800-272-3900, and ask for resources in your area - home healh aides; day care; elder care services. There are a lot of agencies and help available. The Alzheimer's Association can help you access it.
Although our family (3 kids and spouses, sister) are very supportive and understanding of the problem, they all live so far away that they can only get here occasionally. Our oldest daughter, (from Chicago) tries to get here (Maine) 2-3 times per year in addition to her usual visits over Christmas and in the summer. Our younger daughter lives closer (Massachusetts), but has her own problems with an autistic son. Our son lives in San Francisco, so getting to Maine is difficult.
With no family close by I have enrolled DW in an Adult Day Care center three mornings a week so I can get some exercise. Occasionally she will stay all day so I can get other things done.
Stay with this group. You'll get lots of good advice. Also, even though most of those entering comments are women taking care of husbands, there are a few of us men taking care of wives. We do have some different problems, such as having to do the cooking, house cleaning, laundry, etc., which is a new role for us.
My daughter and I had a long talk, and I have found out that it is hard for her to see her mom this way. So if you had an otherwise loving family life, then it may be a case of that it is even more hard for the children and family to see this disease the way you do. You know, if they don't see it every day, then "it isn't happening" type thing. Also, it is harder on children to see this because they are genetically related, and there is not a day that goes by that they don't wonder if that is how they are going to end up. Seeeing it in front of your eyes doesn't help that situation.
If the family didn't get along too well during the growing up years, well, AD isn't a magic bullet to bring everyone together.
Just my thoughts on it. I'm sure not Dr. Phil.
BUT...some things that have worked around here (we have one son who doesn't visit too often) is that I call with updates all the time. The less out of mind, the less out of sight. I find that when I give regular, as positive as possible updates, he is more willing to come and visit. I'd also like to start a blog somehow myself for the out of town relatives, and then they would feel more inclined to get in touch and visit. But I have to wait on someone with the computer know how for that!
trisinger, make yourself a mailing list. If you have Internet Access, you already know how to do email. It is possible to either add multiple addresses to each updated "blog" update you write as an email, or to actually create a mailing list that has multiple addresses already in it. The Help function in Outlook Express should be able to explain how to do this. But I will be happy to talk you through it by email if you need my help. Joan has my email address.
So what you do is compose an email with your update in it. That is something you already know how to do. Then just address it using your Address Book, or use the new Mailing List you created and send it out to everyone in the family. If they use the Reply to All you could actually find yourself with a back and forth conversation with everyone in it and on the same page.
I'm a big believer in technological baby steps and doing things the most easy way.
Thanks...I forgot about doing it that way. I know my daughter does mailing lists for PTA. I bet she can get it going for me.
I guess what I was trying to say is that it's no good to sit around all day and wonder why the phone doesn't ring. Ring theirs! And try to stay positive! People are more likely to offer to help if they think you don't need it!
I'm in agreement with what Starling says, and the only thing I"d add about an email list is don't send out updates too often! Unless there's an emergency, once every two weeks is about as much as most people want to hear from us! If you make it kind of a journal, it may be more interesting to them.
Making a blog, with blogger or some such, is also extremely easy to do. Keeping it up isn't too easy, though, until you get obsessive about it every day!
I was also going to encourage people - all of you who are going through stuff and cleaning it out - consider making scrapbooks with narratives. I'm not talking elaborate things at all. If you can teach yourself to use a scanner, and a simple free editing program, you can even put them together online and once you have pics scanned in you can throw out the real deals. But my granddaughter and indeed my kids enjoy the books I've made. I'll be happy to help anyone who might want to do THAT. It keeps your mind OFF AZ for a while, and you can do it from home with essentially no equipment other than a scanner (printer/scanner), a computer, while your DH or DW is asleep.
or, as mine is doing right now, sitting quietly in his breakfastroom chair, waiting for dinner. It's 2 pm, and he's been there an hour.
briegull, I scrap digitally. I actually do it the fancy way, but I second that you can do it the easy way and it is just as worthwhile. And I've seen the suggestion that one take photos of the things one doesn't really want to keep, but can't quite give away to help you keep your memories. Putting the photos into some kind of scrapbook is a great idea.
my travel pictures for the last several years have gone into photobooks, as well as websites. I've done one for a family - parents whose kids wanted to suprise them, so they smuggled the pictures to me. And I've done calendars; the one I've done this year is selling well on the island, with pictures others submitted for it. It's a fund raiser for the land trust I'm involved with.
As I said, I have to focus on non-AZ things or I'll go insane.
I'm doing a wedding album. We were invited to the wedding but didn't go. My daughter is collecting photos from everyone who had a camera. Both she and her husband had cameras and they gave me hundreds of photos.
It almost feels like I went to the wedding. It has been a wonderful focus and since I'm doing it the fancy way, it is an artistic outlet which is something I need. I'll be printing out 8 x 8. At this point I have 17 pages, but I have enough sleeves for quite a few more.
The only thing that is missing is one photo of the bride alone in her wedding dress. She is dark haired and I want to do "She walks in beauty like the night..." as I did for one of my daughter's photos. So far the only ones I have don't have "good face". Very frustrating. But there are still a few groups of photos to come.
Today, I was thinking about our kids and how only one daughter seems to understand that her father has AD and I might need some help. Our two sons live in town, but don't call unless I call first to ask for some physical help with a chore. The other daughter is 1500 miles away and does keep in touch. How do I tell them they need to keep their dad in their lives? Someday, he might not know them. Maryd
maryd - It is difficult with kids. I remember when I was age through 30, my father had been ill most of their married life and my Mother was a caregiver most of those years until he had a fatal heart attack at 49. Before that her Father had died when she was 13 and her Mother was a invalid. The 4 kids raised themself and took care of her. I have always had guilt because I didn't help her like I should have. I was focused on myself and my young children. Not visiting as much as I should even though I lived only 30 miles away or helping any with the work. I felt I redeemed myself some by moving her to live with DH and myself when staying in the country on the farm became more than she could handle. I was an only child. She lived with us 13 years to age 93 before passing, still in our home, with Hospice.
I think, also, it is more difficult with sons. I am fortunate that my 2 daughters live beside me or within 1 mile and they can be here on a minutes notice if I need something and they offer to stay with DH so I can get out. At this point, I try not to impose on them very often because they work and have children. Son lives 2 1/2 hours away and recently he has started coming 1 weekend a month to be with his dad more. They all realize how sick he is but not as much as if they were the sole caregiver for a few days. Son would be beside himself if he had to stay as caregiver for 24 hours.
I try to arrange family dinners often, either here or one of the girls will have them at their house. My advice would be to continue to call them for chores and feed them while they are there. There is no magic solution that I know about except food seems to help.
I'll keep checking back on this thread for ideas to involve family and friends. This has been a real bugaboo for me.
I've been really proud of the fact that our daughter grew up to be independent and not feel burdened to "take care of us" as we both have always had disabilities and I've seen too many children stunted into caregivers by raising. After college, she moved to California to find work in her field. Since then she's married. She and her husband are fully supportive on an emotional level, but it's too far to commute for physical involvement.
Several members of my family have helped and continue to do so, as needed. I know I can call if something needs doing and the person I call will help or put me in touch with the one who can.
His family is another story. They don't keep in touch, in fact several have told me they don't want to talk or listen to me, even though that's the only way to get a phone call between him and them put through. In the last 2+ years I can count on 1 hand with fingers to spare, the number of times I've asked any of them for help--and a couple of those times was turned down because they were busy. They don't believe he can't be left. "He's lived here all his life--he won't get lost." Their denial of his condition has caused some serious difficulties with interference in my efforts to keep him safe--even to a point of undermining the relationship between the 2 of us. I can't have that, because , if he won't work with me within the boundaries of our home environment, I won't be able to keep him at home and would have to place him--which I am convinced would finish him in short order.
He qualifies for some personal care/in-home help, which gives me some small windows of opportunity to do things for myself or leave the house for a little. I can arrange respite care, where a caregiver comes to 'keep him company', but seldom have used it, except when I have a Dr. appt, or when I had my hernia surgery, or the like. It's no fun going to a show or to the mall alone. I will be going to my niece's wedding in November, but not the reception.
I read A LOT, and recently decided to start working on my own "Twenty Wishes".(See referral on the home page) We have a dog and 3 cats, and 3 different size aquariums. They are definite pick-me ups. Wishes can be things I'd like to try or things I've always wanted to do, but set aside, and making the list is only the first step. The next is figurinhg out how to realize them and then DO IT. And who says, when I get the 20 done, I can't make a new list?
I'm doing everything I can come up with to fight burnout, but getting family involved in helpful ways,hasn't been my strong suit.
I struggled with this for too many years, trying to keep my job then go home and put up with the insanity. My 3 kids, all living elsewhere, just didn't seem interested when I explained the challenges I was dealing with at home. (Daughter was a nurses aide in an AZ unit) Though they knew I was taking their mother to Mayo, they didn't seem concerned or interested. So, it was more than a week after I got home from Mayo with the diagnosis before the first one called. After updating me on all of his activities, he asked me what I'd been up to. "Well, we just got back from Mayo." It still doesn't seem to register with my daughter. I can't explain it. Anyway, my oldest son gave us a run for the money during he H.S. years, especially his mother. Since leaving home, he's become quite an accomplished cook. We live in a very desireable resort area so I convinced him that it would be VERY considerate of him to move home, get a cooking job and help me care for his mother as I couldn't do it myself anymore. Free place to live, free food, bills paid. All he had to do was 1) help me keep mother safe 2) keep her fed and 3) keep her happy? He's been with us 14 months now and has himself a very cool job in a high end resturaunt 4 nites/week. The rest of the nites, dinner time makes my wife happy. A phenomenal cook. He gets weekends off from caregiving so skis & hikes. (More fun than my weekends) All things considered, we're making it work. He is blessed with far more patience than I ever dreamed of. However, he's told me when he has to start changing diapers he's outa here. I respect that. I wish I had that choice. Thenneck
Trisinger - Granddaughter started a Blog about her moving to another state and she and her husband's experiences 12 hours away from all family. It is great and she does a good job of it although she had dry spells frequently. She is disapointed not to get much feedback from us readers. She has a counter on it and can tell how many unique visitors she has and also many times a day visitors revisit.(me). So, she knows she is being read. She wanted me to start one but I do better with just posting here as it also helps me in the process.
Thenneck, that is great that your son is doing that! I can't remember, are you still working? (in addition to your job as caregiver). I hope you manage to get a little time for yourself.
Carosi - I know what you mean...it's difficult to get help. I would love it if someone would even just bring us a meal once in a while. I feel like I'm starting to get a little worn out. I'm thinkin of making a list of all the little things people could do to help. It feels funny, because they are little things (wash the car, buy a vacuum, make phone calls, dust, take B. to get hair cut) but cumulatively they can get a little overwhelming. Once I get the list together, I'm going to email it to my family, because they want to help...just don't know what to do.
shoegirl, I've got a book about caregiving where she suggest the same kind of list you are talking about. When someone offers to help just ask them to do one of the things on the list. She said that it worked for her.
Among the weird things she needed done was someone to deal with medical bills and insurance companies. She literally had a huge box filled with stuff taken away and returned as a small packet of bills that actually needed to be paid. Everything else just needed filing and her friend even set up the filing system and filed.
Shoegirl - I'm 53 so will be working for a long time. Monday thru Friday, 7a- 7p. That is why I needed some help and my son has been a godsend. Simply no way we can leave my wife alone. So, it is either me or my son watching over his mother so we don't seem to get time to do anything together. (Son & I). Need to try harder. Thenneck
Thenneck-you've got a lot on your plate. You must be exhausted, working 12 hr days and then coming home and going to work. Much is asked of us, that's for sure.
Starling-I would love to put my paper work in a box and have someone sort it for me! Now if I could just get another person to magically pay those bills for me :)
The other night when I could not sleep, feeling so stressed, I sent my kids an email about their Dad and how they need to be in his life now. I want them to see him and spend time with him while he remembers who they are. I did not ask for anything. It was a note to let them know what is going on with him. I got on phone call and 3 emails, but at least they did respond. It helped me to do this and I intend to do it again as this goes on. They are busy with jobs and families and stressed of their own, I know that and I told them that. WE will see what happens now.
krag - this doesn't quite answer your queation about getting family to help, I found that very hard. Most communities, however, have adult day centers. I took my husband to one for over 2 years before he had to enter a NH. This one was great. You could do whole or half days, as many or as few a week as you wanted. There were scholarships for those who could not afford even the very reasonable price. The staff was also a great source for getting any other help I might need. I felt that they were looking out for me as much as my husband.
I have been thinking lately that I would post on the kids FB page and ask the kids if they know how there mom is doing? No one has called in over 6 months.
Oh Bob..that is just terrible... I have the same issues all of you do. The kids know that DH has this disease...and just the other day on Skype one of the sons in law said something out of place to which I said I'll tell you what, You come here and take on this job for 6 months, not two weeks..that is not long enough to get it. While you are here dealing with it all, I'll head off to the UK to visit friends there, maybe take a cruise,etc and when I get back you can tell me just how easy this is or what to do..... Then one of the daughters popped in with "I want to take dad to _____"to which her sister, who has been here a couple of times and does get some of it, said "AS he is now, you cannot take him out of his environment or you will have a real nightmare on your hands"... So just today I was fooling with my camera ( video) and decided I need a better one that will work in dimmer light too, and I think I'll make some DVD videos of dear Daddy to send to them so they can see how he walks, how he looks in the morning, etc....even then I doubt they will really get it and not much will change. And the other thing I am going to do is to send each a nice letter, maybe with the video, to tell them they need to make a saving account for air fare to come see their dad more often than they do while he will know them and be able to converse with him...