During a period when I couldn't access this board, I found another forum for Alzheimer spouses (only), and it may be useful for others looking for help.It seems to have more people actively participating, and people post every day. It is on the Alz Connected (www.alzconnected.org) page of the Alzheimer's Association, under Discussion - Spouse or Partner Caregiver Forum here:
Though this site has been my lifeline during the 11 year journey (so far) I've been on with my SO, I find that one useful too, so thought others might like to know. Old threads get revived there too, but often there are 9 or 10 new posts a day with as many as 30 replies and many readers.
We can thank Joan for bringing it to public attention that the needs of Alzheimer spouses are different and worthy of attention.
Thanks, mariposa. I just went onto that forum and it's very interesting. There seems to be a different tone but I can't quite put my finger on it. It seems a little more informal and the people seem to know one another better than they do here, although I can't see how that's possible. There are also a lot of OT posts; some commenters seem to use it in place of a journal. If I were still in the trenches, I would probably sign onto the other site, too, but since my caregiving days are over, I'll just stick with this site for as long as it lasts.
I have not gone to the site yet. but I can share what I have noticed over the years here. When I first joined in 1/2009 there were a lot of women and some men posting. We became very 'involved' in each others life - we became a 'family'. As people have lost their spouse and/or moved into a nursing home they haven't needed so much. The family has grown up and gone their own ways. Maybe if I read the 'in nursing home' or widow/widower thread I would see more of the family but I rarely go there - might once a month read through and catch up, other times just read the most recent. We still have a few of us that post regularly but there is not that big family feeling. Maybe that is why new people don't post again or come back.
I started knowing DH was taking the same road as his Mother sometime in late 2009. I don't remember when I found this site but I would come here and lurk for several years. The frequent posters were way far ahead of me and it was frankly too scary sometimes to read very often. I didn't feel comfortable asking my questions because my concerns felt so miniscule when compared to the discussions here. I felt like how can I complain about today when I can see here how very much worse it is going to get. It also scared me to think about just how many years of this I could be facing. I finally took the Care Pathways series of classes at the office on aging and tried some support groups. I didn't like those. Mainly because most were kids taking care of parents. I've.already done that. This is DIFFERENT. So I got an id here and started asking some questions. Still it is hard to think of what to post. Most of my questions can be answered by using the search box. Thank heavens for Divvi! I've been trying to.say more here because I am so frightfully alone now. I need to talk to someone in complete sentences with nouns and verbs and everything!
So if there are other lurkers out there, let's help.keep this going. I don't know what I would do without you Charlotte, Lindylou, Mary75, Wolf, Paulc, Sass, MaryinPA. I am sure I forgot someone.
I took a look at this other forum and bookmarked it. The topics I looked at seemed like all.are EOAD. Not sure I can relate there. I like the family feeling here. I especially like our virtual reality escapes to the cottage on the lake and the Christmas lodge.
Oh I forgot myrtle. I love it that I can virtually visit her hermitage for a cup of tea and short chat with her and then go back to my dirt moving and landscaping chores. I don't tell about those interludes often enough. Remember all the trouble she went through to get the picture next to her name. Well, I for one am so thankful that you didn't give up on that effort and Wolf helped too.
How do you work, Mary? You just seem to effortlessly turn out all these books, while going through all sorts of vicissitudes of life--health problems, tenant problems--how do you do it?
(Whoops, did I just hijack the thread? Sorry. Mary, maybe you could answer on another thread--Journeys Somewhere Else, maybe. If you have time.)
bhv, I felt the same way that you did when I first found this site. It was rather overwhelming at the time, to read about the experience of others. Yikes, was this what I had to look forward to? People dealing with much bigger problems than I was at the time, I had zero to offer (I still feel pretty much the same about that!) Plus, I suppose I simply didn't want to read about AD all the time, it was going to take over my life (well, yes it does). Very scary stuff. There are many here that have made me feel much more comfortable, even though I don't read it every day & don't make comments all that much. I must say, I enjoy your comments...is enjoy the right word to use here? :)
Hi, It's me checking in. I haven't looked at the other site to check if out because I like this one. Like bhv, I find the people here to be real, thought provoking, supportive and knowledgeable. Like several others have said, sometimes reading the different experiences can make you a little (or a lot) scared of what else is yet to come. Like Mim, I read a lot sometimes and don't join in. I know I should but sometimes the thought of writing what I'm feeling or experiencing is just too overwhelming and I don't have the strength. I should share more and offer support more. My personal journey is going very quickly. From Nov, 2012 to now, we've progressed to placement 1.5 years ago to Hospice being called in as of May and now he doesn't even know me most of the time. But I like this site, and for me, it's all that I need. It's familiar, comforting and is a soft place to land when I need it.
Ditto sass. Our journey is very similar diagnosed in May 2012 now in care for a year. she knows me by sight happy to see me but really couldn't tell you my name and will look right at me and ask about her husband. Tough sass.
Could someone please explain to me about hospice? Thought it was placement to help deal with the final days but when reading posts seems far more that?
My husband has been in a memory care facility for the past 14 months. He has been on hospice since mid February of this year. At the time he was accepted into hospice he was incontinent, non-ambulatory and pretty much non-verbal. What triggered hospice eligibility was weight loss. He had lost an unusual amount of weight in a short period of time, so blood work was done. It was determined that his body was no longer processing nutrients properly. Generally, to be admitted to hospice the patient has to have a life expectancy of 6 months or less.
Hospice has given us an extra layer of care, beyond what his facility provides. Within the first 24 hours he got a hospital bed, alternating pressure mattress, hospice nurse visitation twice a week, hospice aides daily, volunteers to sit with him several times a week and a social worker available to family members. Also there is a massage therapist that visits occasionally and a choir that came once to sing.
Now that it has been going on for five months, I started to be concerned about his continued eligibility. The hospice nurse explained to me that he needs to be re-certified every 60 days. Each re-certification involves demonstrating to Medicare that there is continued decline. It is a very complicated scoring system. Sometimes people "graduate" from hospice and are taken off the program. In my husband's case, I was told that even if he no longer met the criteria, he would be eligible for "home health care" due to his bedsores. Home health care would also occur in his facility, and is somewhat similar to hospice except that visitations are less frequent.
My husband was on hospice for four years. He qualified for each recert with his steady decline. One of the benefits was that he wouldn't be trundled off to the hospital for every event.
Predicting end of life is almost impossible in most cases. Even more difficult with any form of dementia. Many people are on hospice for over 6 months and it isn't uncommon for people to go on and off of hospice. Sometimes rules for eligibility may seem odd and different hospices will interpret the rules differently.