This week I attended the memorial service for a dear friend and fellow caregiver. Yes, she did survive her husband, but her health was irretrievably damaged and went steadily downhill. Even though she survived her husband, I can truly say that in this case this terrible disease claimed two victims.
Why do we always assume that there will be an "after" for us, where we try to put our lives back together and once again attend to our own needs and desires and well-being, like any normal person does?
I wonder—what would happen if, when the doctor sat down and gave us our spouse's diagnosis, they then turned to us and said, "And you will destroy your health and die two months after this disease takes your spouse". Would we do anything differently? Would we really be as willing to work ourselves (literally) to death for our spouses? Yes, these are the last years of our spouses' lives, and we want to take care of them. But in many cases, these are also the last years of our lives. Who is taking care of us?
I was killing myself as well and decided to place my husband last year. It has only been a year since I have not taken care of my husband. Getting healthy takes a long time. I hope to God I'm not a statistic in the next couple of years. I chose to live life.
When reading your post I couldn't stop but think about not just keeping our body healthy but being healthy mentally. Being a caregiver to my dh is worse on me mentally than physically. Mentally I feel like the meanest, ugliest, hateful person alive. I wonder why God gave me such an important job like this. Just for me to do so horrible at it? I fight daily trying to be the person I was before this disease got "us". I constantly ask for help from God to pull me thru this with some sort of compassion and love in my heart because some days I don't seem to have any. I will make it thru physically, but mentally,,,,,,,that one is up for grabs.
I have a friend whose DH died a few months ago from Alzheimer's. She was totally and absolutely exhausted by the time he died. She is one of the most upbeat, caring, loving people I know. Has a terrific sense of humor that always brightened her life and the lives of anyone who had contact with her. They lived in a very small home and it didn't have the latest in decor but glowed with her contentment and joy. Yet AD just about did her in. Before her hubby died, she confided that she wasn't sure she'd survive . . . she was very aware of the physical fatigue and mental/emotional toll on her own health. While he was still alive, she tried to keep active with many of their regular activities (family dinner once a week / church / meeting with a small group from their church) and it is those connections that are a great support to her now. She misses him and wrestles a bit with how raw and hard it was to offer the support and care she wanted to during the last year or two of her hubby's life. She is choosing to live life . . . knowing though that the toll may have been great on her own health. As others have said, it is so important that we look out for ourselves and include some times to recharge (whatever works for us . . . a visit with a friend . . . a hobby . . . a few hours on our own etc). Figuring out how to do that is vital.
When Dh was dx with dementia I thought I could keep him home,As the years went on and it took its toll on me more than I ever thought it would .My health was suffering ,I wasnt taking care of myself at all it was all about him.He did go to daycare twice a week when he would go, sometimes he just wouldn't get out of bed after he had kept me up all night He had been in respite a few times to give me a break and some of the homes were awful I'll agree.My son called a family meeting with myself and his 3 sisters and they agreed it was time to place DH as I was so worn out they worried about me ,just one of my daughters didnt like the idea of her Father going into permanent care.One place he had been for respite I did like as it was run like their own homes ,they could stay longer in bed in a morning if they wanted to and could go their rooms anytime they chose to during the day ,some places they were dragged out at 7am in a morning and their rooms locked until bedtime.After a talk with a social worker ,she said she thought it was time to place DH too.She asked me to ring the place I liked and put his name on the waiting list ,I rang on the Friday of that week and the home owner said we do have a waiting list but we know your DH there is a place now he can come in next week,try it for a month and then if you think differently take him home .It was quicker than I really wanted but I thought if I didn,t take that place it might be a long time before another one came up.The first few weeks I felt the guilt ,I sobbed on the phone to one of the senior care at the home I wanted him back with me.I didnt like being alone at home after 50 years with DH ,plus the money situation wasnt as good as when he was at home .I slowly got used to being alone ,I have a great family which Im thankful for .Dh has been in the home over 2 years now ,I visit regularly and also joined the volunteer group of the home ,I go on trips out with the more able ones and help with fund raising through the year to help pay for the trips out plus Christmas gifts for them all, and for other special occaisons.I feel better and people tell me I look better ,Dh is quite happy where he is so thats a bonus .The place he is in is so popular now there are 19 on the waiting list ,I would recommend it to anyone,sorry this is long but I hope it helps with those anxious about placing their LOs Rosie
mammie, funny thing, this morning I was just thinking how mentally & emotionally exhausted I am. I totally agree that to me it’s more mental exhaustion than physical. I also feel like a terrible person. I personally hope that one of the reasons God gave me this challenge is to show people that they should count their blessings that they do not have to deal with
I agree Elaine, I know there is a purpose and when I am not upset I totally believe this. It is when the demons of alzheimer's raise their ugly head that my negative ideas surface. Thanks for all the support you ladies have given.
Thank you Rosieuk for your post - it has helped me just by reading it. I am in the position of trying to find it in my heart to place DH, it is such a hard decision to have to make. I have the paper work done and all I have to do is to take it up to the facility, but I seem to put it off every day. I know the facility has a waiting list and is a good place for him to be, but I would hate it if he was unhappy there - I feel so guilty to be thinking of placing him, but the time has come when I can't manage 24/7 and I have'nt got any family help at all.
sylvia, I too worried that DH might not be happy, but I knew that his safety made it necessary to be placed. Now, four months later, I can honestly say I've never seen him happier. The non-threatening atmosphere of the ALF is probably a big part of it, I don't know, but it came as a pleasant surprise. He's relaxed and smiling.
Sylvia, it is always harder on the caregiver I think placing your DH or DW can be one of the hardest things you ever have to do.In some of the other posts it says Alz disease can claim your life too with the exhaustion mentally and physically you endure over a long period.I dont have set times to visit I go at all times which any good home will let you if there is nothing to hide.Dh is always clean and shaved and there are no bad odours which you get in some places .The staff are really good with the residents.DH seems reasonably happy so that makes me feel good too,he still knows me and our kids but not the grandkids .How bad is your DH Sylvia does he still know you ?It wouldnt hurt to take the papers in and put your DH on the waiting list ,Ive heard it many times that by the time we think our spouses are ready for permanent care its probably way past the time when they should have been placed.You are still his caregiver and his voice even if he is in a care facility plus visiting without all the stress etc associated with caregiving at home is lifted so you enjoy your visits with them and in a way give them your undivided attention which you cant at home there is so much to do.I hope this is helpful for you Sylvia,take care now Rosie
My husband died after a long battle with Alzheimer's Disease. I cared for him at home until the very end. In the year following his death, I suffered a small stroke that resulted in one eyelid being closed for over a month..(it's since 'mostly' opened again.) Then I was diagnosed with Type II diabetes and later in the year, low thyroid. I've suffered through three urinary tract infections and a respiratory tract infection during this time. In THIRTEEN MONTHS. Coincidence? Or Not! I had not seen a primary care doctor for myself for at least four years before he died because I was OK, only exhausted all the time. All attention was on my husband, no one ever thought that anything was wrong with me.
Oh,Nancy B*, No, not coincidence. Take care of yourself!
And, ladies and gents, get a checkup at least once a year. I go to my GP, GYN and Dermatologist once a year. So far, I have kept my BP down - no meds, my Vitamin D is great, I only take one med - for Cholesterol and it's been way low for several years now. We only go through this life once - make it count!
My dh is on the waiting list for a facility; it is not a long list, so I was in constant turmoil, waiting for the day. One morning when I found out my phone had not been working, I practically panicked that I may have missed the call and called the placement officer myself to ask where he stood. He explained that things are moving very slowly and it might be a while yet. That was not what I wanted to hear but it calmed me down and made me realize that instead of stressing out I ought to be enjoying this time with dh at home. The time that he is in the facility will be long enough. And just knowing that there will be an end to the 24-hour care within the near future is a big support to me.
Jeanette...I really relate to and appreciate your attitude. You're a few steps ahead of me on this road, so I watch how things are going with you and take some comfort. Which is kind of what we all do here.
Rosieuk, where in the uk? Ireland? I say that because my mother always used to end her letters with "God bless." I looked you up on "Where are you from?" but didn't come across your name (there are so many). I have this map in my head, and I know where Bama is, and Divvi, and ol' Don, and lmohr and Nancy B and MarilyninMD and Joang: they are all like bright lights on there.
Rosieuk i am so glad to hear DH is well cared for and still able to know you and kids. its been a good while now. for others, rosie uk and i were friends on another AD site several yrs ago that closed down unfortunately. she and i caught up and i told her about here for spouses only. i was so glad to see her posting. she also is a long verteran that has many yrs under her belt. rosie i believe you are in england if memory serves. its good to hookup with old friends who were there so many yrs ago and know your stories.
mary75 its good to hear you are holding your own and pushing forward friend. lots of papers and headaches yet to work thru but the day will be here soon enough you can regroup and start your life of happiness again. divvi
Mary75,I live in north west England in a seaside town called Morecambe just across the Irish sea from Ireland ,look it up on the map we arent that far from Ireland really just the Irish sea between us .Its good to hear from you too Divvi and I thank you for leading to me to Joans alz spouse site ,thanks to Joan too Im so glad she started this site for spouses.I still go on vacations with my daughter in November we went to Portugal divvi and was in Spain earlier in the year ,if my memory serves me right you had your honeymoon in Savannah wasnt it ,I admire you divvi and others that keep their l/o s at home ,i wanted to but as it is now I know if anything happens to me Don is cared for ,take care God Bless
Nancyb*,sorry for all thats happened to you since the loss of your DH and yes it all sounds very familiar ,as carers of spouses with ALz most of us do neglect our own wellbeing,as you said all the attention is on your l/o .Too much to only be coincidence its the years of caring taking its toll on your health ,time to take care of yourself now Nancy , God Bless
I havent always lived in Morecambe Jean21,Im originally from Yorkshire but have lived here since 1969 when my DH took a job here .Morecambe has changed a lot over the years with more supermarkets and shops now where the fairground used to be .A few years ago Morecambe who had its own council merged with Lancaster and now it seems we are the poor relation compared to Lancaster ,one thing they cant lay claim to though are the wonderful sunsets we get over Morecambe bay
rosie uk no-- honeymoon was in Sorrento italy!! haha now i do like savannah but you have to admit sorrento and the amalfi coast is much more romantic.. :) i dont know i would ever be able to return without my sweet husband.
i can also say its so very true we do tend to ignore our own health appts over the yrs. i just got to see my cardio dr as well after 4yrs..:( not good to avoid appt we know we should make!