I sure hope I have not left anyone out. If I have, please bring it to my attention here. I want to welcome all of you to my website. I've been recovering from surgery, so I haven't been as fast in welcoming new people as I usually am.
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD- now called YOUNG onset). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
When you feel comfortable, please tell us more about you and your spouse.
I hope you all keep coming back and sharing with us. So many will post just once then never again. I often wonder how they are doing, if they found other sources, etc. - just do not like the thought of them going it alone any longer.
My husband, 77 years old has dementia, and I am struggling with my impatience. He has been diagnosed for about 4 years and is getting rapidly worse but still lives at home. How will I know when it's time to have him live someplace else . . . we do have a good family doctoor and a seniors clinic. I am just so sngry and frustrated and tired. Tell more later
If you are thinking about placement, time to start looking. I would contact the Aging and Long Term Care for an assessment or talk to your doctor. Do you get any kind of respite? My husband goes to day care 3 days a week and it is so nice even though the 6 hours he is gone goes by quickly - too quickly.
"I am just so sngry and frustrated and tired" - an definite indication you need some respite. You might look into a week placement for respite. A lot depends on your finances.
He has another bladder infection, the 3rd since he had prostate surgery a couple of months ago . It's five pm and he's in ber already, says he feels unwell, and he looks unwell. Started another round of antibiotics again yesterday after I had just been giving him probiotics because of all the recent antibiotics. I am so sad that I am being so impatient and I am overwhelmed. Think I will cll our family doctor and see about respite care tomorrow. He does go to day programs twice a week, but it seems that one of them gets cancelled every 2 weeks or so, so it isn't regular enough
It is time for placement when you are no longer able to properly care for him. This includes the effects on your mental and physical health and your happiness and your safety. If you are angry, frustrated and tired those are signs that you are ready to place him. A good test is to place him in respite for 2 weeks. It will probably take a week to be able to relax. You may find that after respite that you are ready to go back to having him at home, or you may realize that his care at home is too much for you. If you do place him you are still caring for him, just in a different way.
ruthb, I'm so sorry that things have gotten this bad. I think paulc has a point but without more information, I would not assume you are no longer able to properly care for your husband.
It's clear from your posts that you are in over your head right now but it's not clear that you have taken advantage of the help available to you. If you are able to obtain the services of an aide or care manager or visiting nurse (or if you have benefits that would provide these services), then you should get that help. But if you are stuck handling this situation alone, without any help, and only two days of day care per week, then you have probably used all the help available to you and should think about placement. If you can get some respite care for him, it might give you the rest and space you need to think through this situation and get some on-site advice. Please let us know how you are doing with this. Most of us can all relate because we have been there.
Also wondering if there are any family supports, or if you are all alone dealing with this? I agree with the others who have said that it looks like you need more help, in whatever form seems appropriate...day care, Respite, an aide in the house, family pitching in, or maybe placement. If you are tired, angry, frustrated, and impatient, that is a clear sign that you need some help.
I've been widowed for two years, and in looking back, I can see what a toll being an Alzheimer's caregiver takes. You really do need to hang onto yourself--your physical and emotional health, your own "center" and sense of peace and balance...much easier said than done, but it's crucial. Don't let the dementia take both of you.
As I have stated on other posts, placement is an individual decision based on many factors. For me it was not so much the physical toll because he was ambulatory and could feed himself etc but it was the mental and emotional strain of finding things for for him to do, trying to work from home and having little to no privacy and the fact that I could no longer leave him home alone because he did not know how to,use the phone. I knew deep inside that I had to do it to,preserve my sanity. I did it to save myself and in the end we caregivers must do that or it will indeed kill two people.