I have been living with Alzheimer's for about 4 years now and am at the end of my rope (the knot has come undone). I just thought I would try and list the things this horrific disease has stolden from our family. 1, MY BEAUTIFUL WIFE. She is still hear but I don't know who she is and visa versa. We have been married 35 years and are soulmates. 2, My family and hers. They have all run for the hills rather that try to help and support us. 3, Most of our friends, gone the same place as family I supose? 4, Our dreams for the future. 5, My career. 6 Our retirement together. I have retired very early to care for her (I'm only 56) 7, Our part time buisness that was going to be our retirement. Probably our farm to. 8, My faith in humanity, even the Drs only want to drug her or have her placed in LTC. 9, Our sons who have left and must be trying to deal with this horrific disease in there own way, non supportive of us. 10, The church, DW was, is godly, I asked for her to be treated as a shutin for communion ect., Father showed once and we haven't heard from him since. (I'm sick of begging) 11, My own sanity, I have no one to talk to about all of this or anything anymore. 12. DID I SAY MY WIFE. I wish I could be as upbeat as some others on this and other forums, but I haven't seen anything worth even living for lately. We just try and stay alive for another day and hope for the best. I don't mean to be so dreary but thats all I can feel right now.
My heart aches for you and the loneliness you are feeling. This dx robs us of so many things and yet we need to hold on. Each one of us deals with it in a different way. Some do it with humor and others with retrospection. You need someone to talk to. Look for a counselor and some respite care. It won't change things at home but maybe the outlook would be better. I'll be praying for you.
selwynfarmer, I am so sorry you have no support...especially from your church and Priest. Is there another church you could check with and see if the priest would come and give your wife Communion at least once a month? I hope things improve for your wife and you. God Bless.
Selwynfarmer, such a tragic list, my heart goes out to you. So sad. I agree that you need someone to talk to -- a face-to-face friend; is there really no one? No way to get some respite?
Selwynfarmer, I think it is terrible that the priest or Euchristic Minister does not call on your wife and you. I am an EM and take communion to the hospital. I do, now and then, run into a pt who has dementia of one kind or another and it is difficult to communicate what I am trying to do but if you are there and are participating with her, that can help. At Mass a few Sundays ago, I also am an EM at Mass,during the flu season when we only placed the host in the hand, I had a lady who wanted it on her tongue and I could not talk to her...finally someone, the someone who came with her and went to a different EM, came back and told me she had AD. Had he stayed with her and let me know I would have made the exception without hesitation. If you are still attending services, perhaps you could get some training from the priest so you could bring communion to her. My hubby no longer goes to Mass with me and he won't let me bring him communion. I don't know why and he can't explain it to me. I also identify with your list. Our girls, who live on the other coast, do come out and communicate but I am angry with his so called best friend, the person we came across country or drove for hours to visit and now he " can't handle seeing him this way" as his excuse..but I should expect nothing different, When his own mother had this disease he never went to see her..not once after the DX when it would have still made her happy even if she didn't know who he was..a visit could make her day.
Strange thing about this disease it knows EXACTLY what each of us values the most and often takes it FIRST!
If I broke into your home and tried to steal exactly what you cherished most I might take a few of the items but certainly I would leave many items behind such that you would say "Whew, at least he didnt take that item!" AD somehow knows what each of us cherishes and somehow it ALL disappears without a trace.
In a posting from a while back someone was talking about how they could no longer participate in seasonal hunting with their spouse. I dont hunt, never have, wouldnt even know how to start. AD could easly take all my hunting opportunites and I would never miss them, but AD knew that this couple liked that activity and took it!
My marriage was based on a dual career. We were DINKs (Dual income no kids) AD took my wife's professional career at age 57 (Registered Nurse) Now I have a 'housewife' on disabilty. Not something I ever wanted at age 52.
So many other diseases and disabilites take a few things but not everything. Injured athletes can still participate in wheelchair sports.
Why and how AD knows what the worst thing is to steal from us I have not yet figured out. But I have figured out that this disease is all about LOSING. Everyday I look to see what next has disappeared. Grieving these losses becomes a full time occupation.
The other thing AD brings to us is a need to scream out "I CANT TAKE IT ANY MORE!" Thankfully we have this (secret) place to do just that and have our outbursts fall on understanding ears. ;-) Scream all you want. We all have at one time.
For me the upbeat attitude came only after being beaten down enough times that I stopped expecting any good to come out of this.
selwynfarmer--Your list contains sad facts of many of our lives. Caregiving our LOs is isolating, frustrating, and never-ending. That said, a very important part of the Caregiving role is to take care of ourselves. It is NOT being selfish to do so. If we do not take care of ourselves, who will take care of our LOs? Get in touch with your Area Agency on Ageing and see what services or referrals they can provide. See your Dr. for a referral to a counselor and/or for meds. to help stave off depression. Call your church again, and speak to Father. Tell him your wife has Alz. and is homebound, as are you as her caregiver. Ask, why your request for Communion to be brought has been so badly ignored.
It is unfortunate, but we have to be our own advocates. I have been DH's Caregiver since his Dx with a Mental Illness in March, 1988. Sometime after that his Vascular Dementa kicked in (who knows for sure when)and he was Dx'd in Aug.-Sept. 2006. I told the Drs. the best place for him was home, but I couldn't do it all myself anymore. We have some in-home help and I get 4 hrs. a month respite. I called our church and asked for Communion (DH refuses at this time but can have it whenever he changes his mind). It is brought weekly, barring illness. Unfortunately, DH's family is pretty much gone with the wind. That's their loss. My family helps when they can. Our Daughter is 100% in tune and supportive but lives in CA (we're in MIchigan). I'm almost 62(not much older that you) and I have plans. I will get my DH through this, and I will have an AFTER. The shape it takes is still to be decided. I refuse to bow low before Dementia and let it flatten me. Join me in depriving Dementia of its destructive goal of robbing our LOs of their minds, their dignity, and themselves.
Alz has taken everything from me that I can feel. A wall has been built around me, it seems. Sometimes all the feelings come pouring out though. I can fake it really well. I seem really upbeat and positive to those around me lately. They think I'm "adjusting" very well. I think Alz has made me a very good actor. Maybe I should get headshots, an agent, go to L.A.
There will be a day when I wake up and I feel very upbeat, I then can handle anything (I think). The next day, sometimes without explanation, others with some, I feel like I do today, I feel as though there is no out. I love my husband and wish him no ill. I look at him when he doesn't realize I am, and I feel so sorry for him. Right now I feel like crying just writing that. He thinks everything is just fine, but I don't. He's content just to stay in the house every day, but I don't. Just before bed, he always asks what we're doing tomorrow. When I say nothing, he's happy....
I am very fortunate though. Next weekend we go on vacation with the kids and grandkids, and he's looking forward to it. Thank God for that.
Bev, same mood changes for me. I have so much trouble hanging onto a good mood. It feels like such an accomplishment when I wake up and get myself in a good mood and am just too influenced by DH's behavior or his mood and I let it bring me down. I really work at not doing that but haven 't mastered it yet.
Ditto here too. My DH is getting snappy..he never used to be this way. Tonight he was taking his evening meds and he took the tablets with no problem. then the insulin. He takes two different types, one long acting Lantus in the am and pm and also in the am he takes one called Victoza. He was about to take the victoza..When I saw what he was about to do I just said no no no..that is the wrong one use the gray tube not the blue on....he looked at it and t hen threw it in the basket and took the right one. I know he is frustrated and feeling like I am bossing him around but he was about to make a serious mistake. I have to stay with him when he takes his meds. Now I need to adjust my methods and just like I dish out the tablets I now have to take the blue tube out of the basket so he doesn't see it and get them confused.
Then to add insult to injury, tomorrow the guys were going to go out prospecting for gold..it is a hobby he has alwasy loved to do. Our middle girl arrived today as a surprise and she is looking forward to going out there with her dad and the guys and take photos..she is really good at this. Well our well meaning neighbor, who earlier said if she wants to go I'll step aside, took in upon himself to call the other guys and guess what...they cancelled this event! Of course daughter and dad don't know this and won't until the morning. I had other plans and now my day is all adjusted as well and I am more than a little ticked off.
I don't know why, but for some reason, my husband seems to be in a bad mood on the weekends, not all of them, but most. When he's like that I say to myself, as so many others have told me to do, that I won't let his mood inflluence mine, but eventually later in the day, it does. Like I've said before, I feel like a yo-yo. One minute up, the next down. I really believe I'm handling this rough part, to say the least, in our lives very well, but I think that since he was first diagnosed, when I seemed to have accepted it as just part of growing older (but now I realize I must have been in shock, I accepted it too easily), now I'm feeling afraid of the future. I try to take one day at a time, I really do, but sometimes find it difficult and wonder how I'll be in the future. Will I have the patience to handle the much more difficult times to come? I hope so.
DH throws things too when he gets frustrated. This morning when he didn't understand which pot to put some mulch in while helping me he threw a large metal trash can across the yard. Unfortunately it was 7:30 AM and I fear he woke up some people. Thankfully these episodes are less frequent now that I've finally learned how to avoid frustrating situations for him.
That's interesting. My husband tried to throw his I-Phone through the floorboard of the car Sunday morning when it dropped a call. It really shocked me because 1) the phone has always dropped calls - we have a running joke that the I-Phone is great unless you want to make a phone call, and 2) I was surprised he would get so violent over something so mundane, and 3) that thing costs a lot.
It was clearly a total inability to handle, what to me or anyone else would have been normal, everyday frustration.
My middle son was home from college, and he really picked up on this aspect of his father’s condition. He asked me, "What is up with Dad? ...He's such a Negative Nancy...so mean and nasty....I think he's depressed and hates his family." Awww, I felt so badly. I assured him that's not it at all, filled him in on what's been going on, told him how proud his father is of him and his achievements, etc. I explained that his father is not only worried and stressed because he may be now noticing his own deficiencies, but that it's possible the personality areas of his brain are being affected.
I had not gone into any great detail with this son prior to that, he is away at college, and sleeps only 5 hours a night to maintain straight A’s in a Physics program. I felt he definitely did not need the added stress. But since he has been home, there is no hiding it. I told him that what his father needs most from us right now is lots of patience, love, and understanding. It was hard to tell him what’s been going on and to see his reaction. He’ll be spending most of his summer away at an internship, so he’ll be spared having to see much more up close.
Maybe if the “throwing things” keeps up, we should enlist our DHs in a softball league, or shot putting club... :)