Hi everyone, I have been following this support site for some time and am encouraged by the comments - I have learned a great deal. I am 69 and my husband is 75. He was diagnosed with Rheumatoid arthritis in 95, Parkinson's in 2005 and along with that now has FTD dementia. I have no idea what stage. He is totally wheelchair bound and we have a full time caregiver who cannot handle John alone, so I must help with many tasks. We do use a Hoya lift although it entails screaming and fighting. John's condition has worsened over the last months with punches occasionally and continual verbal abuse. He cannot feed himself, so must be fed with a spoon. At the advise of his doctors I have to start looking at placement. Some say Board and Care would be a good place to start, but I wonder if any of you have experience with them. Also it seems to me John may be beyond Board and Care as he cannot do anything for himself, not even hold a bottle of water. How do you start looking for Skilled Care, it horrifies me that I am going to have to do that, but it seems it may be the way to go. I cannot afford another full time caregiver, and his needs are 24./7 so a part time worker would not help that much. We live in Orange County, CA and there seem to be a lot of Skilled care places, but I am at a complete loss as to where to start. I am exhausted, and discouraged at this point and it is hard to discuss this with someone in person without falling apart.
I appreciate any input you could give to help me get started on this final leg of this awful journey. His doctors suggest Hospice whether it be here or at a facility, I don't know much about how that would help as he is not at the end stage of his life right now.
Thank you so much - this is the first page I turn to in the morning when I turn my laptop on.
Welcome Wendy. Why don't you see if you can set up an appointment with social services in your local hospital. They should be able to provide you with a list on SNFs (skilled nursing facilities) they use. Your local Alzheimer's' Association may also be able to help you. Sounds like a care home might not be appropriate to provide the care your husband needs. Good luck. We will be here for you.
Welcome, Wendy. Also check ith your local Area Agency on Ageing. They are a good resource for services--what's available, what you may qualify for if assistncte is needed. Contacting Hospice can get him evaluated for their services and get questions answered too. My DH qualified under "debility" and as long as he continues to show decline, they'll stay aboard. Your DH may qualify but not need much in services yet. Doesn't matter---if they're on board they'll increase help as needed. Best thing to me is that if anything medical comes up, they';re my go-to folks. You call and they answer, come out to you,. do whatever is needed, and there's none of the delay like when you call the r.'s Office, tlk to the nurse, message is relayed to Dr. ..... Also, it occurred to me, if your DH quaifies fcor Hospice, the extra help you need may be available off your dime. Hope this helps.
Welcome Wendy, You have landed in a soft spot. All here will help with advise and care...we are going through it too.
I live in a small West Texas town so my choices were limited to one Assisted living home and one Nursing home. My ALF is wonderful and I hope I never have to move him, so cannot advise on choosing. Many times when you check the daily rate a a NH and add what it would cost for 24/7 care at home...the NH is cheaper. PLUS, you need relief as well! Caregiving is so demanding.
Wendy, I have no experience so no direct advice for you but would like to extend a warm welcome and much sympathy. It sounds like you have a tough road to go right now. Very glad that you have found this site. It makes a difference!
I am expanding on my welcome from last night. Since you are so far along in the AD journey, and looking for placement information, everyone's suggestions have been good ones. I would also encourage you to go to my home page - www.thealzheimerspouse.com, and look on the left side where all the resources are located. Scroll down until you come to Elder Care Locator. Click it, and follow the instructions. It will ask for your zip code, and then give you the address and telephone numbers of who to contact in your area for information. Excellent resource.
You have come to 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.
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.
I just placed my 63 yr husband last Wednesday and the pain is almost unbearable. He is entering Stage 7, unable to do any ADL'S, even feed himself. I am almost unable to leave the NH, as my pain is so great. He doesn't even know where he is-only that he loves me. The pain, guilt is very unbearable at times. I keep telling myself why did I do this horrible thing to my husband? I am alone without my love, and it was UNBEARABLE with him- but now even more so, without him. I miss him and watching over him- but yet I complained about it, while I was in it. I cannot stop crying- yes, I have called the ALZ Assoc., and have an appointment with my MD tomorrow. I keep reflecting on what he was and what we have lost together. Today, I did go get an oil change- guess what I said to myself? "Maybe he really doesn't have Stage 7 ALZ- maybe you exagerated- the CT Scans, Doctors, family, Geriatric Specialists must be exagerating" - how stupid is that, of me? Will my heart felt pain and tears ever stop?? Guilt, Guilt, Guilt.
ckkgram with your husband at stage 7 there is no need for guilt. When my dear husband reached that stage it was not pretty. Just visiting him and watching him gasp for every breath of air hurt. Hospice kept him as comfortable as possible. Better to remember your husband as he was rather than as he is.
You are entitled to feel emotional pain at placing your husband. But guilt? NO. You've done what you could for as long as you could, and now you are placing him in the hands of professionals who rotate shifts and go home and sleep before they come into work. That is something, you, as a caregiver cannot do. You will still be overseeing his care, but you will have the time and energy to just love him without the "heavy lifting" of direct hands on caregiving. Give yourself a break - NO GUILT.
My wife also has FTD and had gotten to a point where, as you said, moving her involves alot of screaming and fighting. The nursing home does not like this. I am heartbroken over how they have drugged her into submission. Personally, I regret my decision to place her. My advice would be to discuss this difficult behavior with the nursing home and ask how they plan to address it. Then you need to decide if you can stand seeing him totally helpless.
ckkgram: You are experiencing the same thing in the same way that I did and still do to some extent. I have moved since DW was placed and I wonder all of the time where she would want certain things put and wish that she was here to talk to. I am putting her things in our (my) new house just because I want to.