I cared for my mother with vascular dementia for 8 years...it took over my life gradually,as caregiving for dementia does.By the time she passed away in 1990, I was out of touch with most everyone, and it was a long time in rebuilding friendships and a social life. My husband was my strongest support. By 2000, I suspected my husband was having memory problems; everyone thought I was imagining it. By 2001, he could no longer work, although the AD diagnosis took another 3 years...initially we were told MCI.He was 55.
I feel like I have burned out way sooner than I should. He is probably mid-stage 6,and it seems I should be able to care for him, he certainly doesn't need the extensive care yet that my mother did at the end, and yet I just don't know how much more I have to give. I have a tug-of-war with myself.
Is this a second time for anyone else? How did you keep yourself going? I feel like the fuel tank is on empty half the time.
be kinder to yourself you have been at this for over 5 year, anbd to some degree 8 from what you are saying. I had my mother in law 30 years ago and only for 2-1/2 years and I am pretty burned out with my husband who is older than yours, aboiut the same stage, diagnosed in 02. I threw in the towel today and cried uncle. I can do this if I get some help and that is what I looked into today. What about you, do you have help. Can you get out and take some time for yourself
My mother passed away this May. She has lived with us for over 10 years. She didn't have dementia until a year before she passed away but she was in and out of the hospital for a few years and pretty well tied us down being with her. My husband has had AD for the last 7 years. After my Mom passed I thought maybe we could go on another cruise or something but my husband has really declined this year so I feel like a "wet noodle". I am so tired of being a caregiver 24/7. I am tired all the time and I am on Lexapro and xanax as needed and I need a small dose every night. That keeps me sane. I think I am sane.
Often times, I wonder. When I am on my own, I can't imagine how I will manage, but other people do so I guess I will too. My cousin, 66 lost her husband a couple years ago by a sudden heart attack. No warning, no previous indications and she still mourns him. She keeps busy doing volunteer work - all the time - so she won't have to stay home. I think she would have addapted better had she had advance preperation and warning.
Yesterday. Let them come out for an evaluation. Your doctor is the place to start as they will need a referral for services. They have been wonderful to us. The social worker calls me periodically (today) to see how I'm doing, need anything, ok with scope of service.
bluedaze, it is my understanding that you don't always need a doctor's referral for hospice. Hospice will do its own evaluation, and you can contact them directly. There may be several organizations in your vicinity that offer hospice services, and they may have somewhat different criteria as to which patients they can accept, too.
Hospice is a very active topic on the Alz Assn discussion forum. One of the most knowledgeable and experienced people there recommends speaking to several nearby medical centers and the local Alz's Org, to to find out which hospices they prefer to use and why. Then call two or three different hospice organizations and speak directly to them about the ADLO's condition, the likelihood of his/her care being covered by hospice, and their basic philosophies and approach to care. Do not address your questions to the admission person, who may or may not be a licensed nurse -- ask for the RN Supervisor instead. The RN supervisor will know more and be more accurate and complete when sharing information, and will work with you to achieve what you need to support your LO.
She says that AD patients accepted into hospice are typically Stage 7, but hospice RN supervisors understand that hospice organizations understand that patients do not always fall entirely into a given category, but may have symptoms of both stage 6 and stage 7; nor do they have to fill ALL stage 7 criteria to qualify.
I am new to the message board. I was sole caregiver for my mom who had AD and died in 2000. My husband was diagnosed in 2002 at the age of 59 with AD. He is now 65 and I am 64. He is in an assisted living facility at stage 7 as I could no longer care for him at home. This has been a really bad week for me. He hasn't recognized me for many months but just this week he doesn't like me. He is sweet to all the caregivers but very mean and uncooperative with me. I really am tired of my life being consumed with AD. The second time around is much harder than the first as you all know that caring for a parent is much different than caring for a spouse. This site is very important to spouses as we do have a unique and difficult situation. I enjoy and appreciate all your comments.
We can all relate to your feelings. This is a great site so log on often and continue posting. One of the best therapies I know of and you start feeling like family.
Welcome lonely. My husband is also in a dementia facility because I couldn't keep him safely at home. He started showing symptoms in his late 50's and was fired from his last job at age 64. Rages became his way of life. So sorry for you the second time around. We on this site are all hurting. bluedaze from Fl.
Hi, Lonely, welcome to our little family. I'm sorry this week has been rough for you. My mother was mean to everyone, near the end, so it didn't feel that personal when she took it into her head to attack me. And yes, it is so very different when the ADLO is your husband, much more painful than caring for a parent.
Welcome Lonely -- I hope you will find comfort and encouragement from all here...we are a family, but more than most families during a time such as what we are all experiencing. I am sorry for the feelings your husb has had for you this week...hoping for better days ahead for you & for him. Take care of you!!
round two? you have got to be kidding me! I already told my whole family, if they get Alzheimer's .... sorry! your butt is going in a home. LOL. They all got a chuckle out of it. But, I seriously do not know if I could do it again. I have cared for my grams, but she did not have AD. Her care was hard, but it was so different than this!!
I am the caregiver for my 95yo grandmother who has AD - i make decisions and implement them with her. My husband is MCI or very early AD and just this week decided he has NO memory problems. I find it very difficult to cope with him as our money is tied together and he doesn't allow me to make the decisions alone - and I don't want to have to - he wants and needs to be involved and respected. But he bounces checks, and doesn't reason through things well. He also gets very angry and yells at me every time it is obvious he just forgot something that I remembered or had to remind him to do. Taking care of my grandmother is easy enough I'm starting to wonder if I could do this for a living...(^_^)... oh wait someone slap me please if I ever say that again. But dealing with my husband who I love and adore is very hard.