I have been very depressed for the past few weeks, due to this alz life I am leading. I am 67 and fel like life is just passing me by. I hate to feel this way! I am so blessed in so many ways. My dh is stage 5 and has been for quite awhile now. Things could be so much worse and I guess I'm waiting for worse ness to happen. I want to be here for my dh but also want to live my life! I know I eed to get out more, but of because of these responsibilities it is very hard. I know I'm not lone, I expect everyone that reads this will agree. It is hard to keep your dh happy and be true to yourself,keeping you happy. How are you people doing that?
I am the wrong person to ask. I literally almost let caring for Lynn kill me. Lynn was aggressive, to the point that I was told flat out that no agency would subject their help to his behaviors. We did increase his medications, but he was still so unpredictable that I could not get in-home help. And that is what is vital. It has been stressed here many times the importance of getting respite. It is the only way I can see that a caregiver can not lose themselves completely. I hope you are able to find a way to get some breaks, you too deserve happy moments.
At age 55 I was blessed that I still had a job that I HAD to go to. So, mom and dad helped and I got paid caregivers. ($2k a month paid for by her SS disability check) Then I just knuckled down and endured it. However I never saw what all it was doing to my parents. Then in the end it would up killing them.
I have not known happiness for a long time. I did not realize that I had turned down the volume on my emotions so low that I was not feeling ANYTHING. (happy or sad) It has taken over a month for me to come close to being normal enough to even begin to feel sad and be able to cry.
It is a depressing existence. The ONLY hope is to POSSIBLY do something, ANYTHING for yourself. Day care, respite care, even setting something up to be able to go shopping by yourself can help relieve the stress for even a short time. Sometimes I left work early just to be able to walk thorough a market alone.
Perhaps guilt is holding you back? NEVER, never feel guilty about wanting to escape for even a short break.
At the risk of being a real Debbie Downer, I think it's almost impossible to be "happy" given our situations with our spouses. I certainly agree that as much respite time as possible is very important. My DH is out right now with his son (after I called him up and told him to stop hiding behind his kids and spend some one on one time with his father) and it's the most time I've been alone in this house for at least a month. I already feel much better.
I think the weight of the responsiblity to keep our spouses active, motivated and out of danger is immense. Caregiving for dementia should be a team effort, but I guess that's only in Fantasy Land -- at least in my Fantasy Land!
Good luck -- try to steal some private moments when you can. Hang in there!
What I am finding so difficult right now is keeping my temper with everyone who annoys me in the slightest way. I've gotten really good at staying calm around my DH, but something has to give. And if I am not getting angry, I am getting depressed. I had a "friend" call the other day asking if I was pissed off at her. She is one of those "friends" I've put on the back burner, because of her attitude towards us since my DH was Dx'd. Ignores us completely (unless she wants something) and then wants to know if I am pissed off? I'm not angry at her, I am angry at the situation, and disappointed in her. And after she hung up the phone, I cried for the rest of the day and part of the next.
Ky caregiver, I'd also like my life back, I would like to get out more, I'd like to end the boredom of sameness, I would like to be able to do activities either alone, or as a couple that don't involve me researching whether that activity is suitable when one half of the couple has AD (Is the trip too long? Will I have to worry if he wanders off? Can he handle the stairs/walking?). We've even changed the grocery store we shop in regularly to one where he can't lose sight of me! And I am sitting here in limbo waiting for the "worseness" to come.
So, I guess I'm doing a decent job of keeping my DH happy, but a terrible job of finding happiness myself. I think you have it right, Elaine K. I don't think there could ever be enough respite time.
I felt exactly the same way and finally took the step of placing him in respite and in two weeks am actually taking a vacation with a friend for a week. I also decided to place my husband in an assisted living at the end of the summer and am going back to work to pay for it. I am 66 and feel I still I have some work life in me. I felt as if my life was ebbing away also and decided the only way that is going to change is for me to change because as we know our husbands are only going to get worse. It all began in steps--starting with respite and then taking a vacation etc. the thing is with placement is I had to reach the point when I said to myself I am done living like this and until you are ready to take a step and do something for yourself nothing will change. Just making these decisions has given me a new outlook that there is a life outside of the Alzheimer's nightmare. I got so tired of being angry all the time and even tho intellectually I know he cannot help himself it does not lessen the emotional frustration of trying to carry on conversations with him and having to do absolutely everything. Now he cannot even turn the television on and off. I decided early on that I refused to allow his disease to kill me too. I am hoping that our relationship will improve once he is out of here. I want to be able to be more compassionate but I am so busy doing everything for him that I am unable to.
How do you place somebody who doesn't want to go? I toured a local NH and the gal who gave me the tour told me that they couldn't take anybody against their will. My DH will never go willingly. I do think I'll try to place him in respite care next summer and take a vacation and get him conditioned to me being gone and him not being at home, although he thinks he can stay at home and take care of himself (not) - perhaps I can ease him into it? One day at a time, I have learned that trying to plan ahead is futile as just when I'm feeling comfortable with the situation, it blows up in my face and I have a new crisis on my hands.
Do you ever wonder who you will be when it is all over?
One path is guardianship. You need to talk with doctors and a lawyer to see if this is likely to work.
My wife surprised me by agreeing to ALF. She doesn't want to and I can't believe it will happen until,she moves in but cooperation is much greater than I expected. We visit one today.
Respite is certainly one way. See how he reacts when you return.
CO2 is exactly right. Until we we are ready to take a step toward change nothing is going to change. WE deseve a life also. It seems people look at us caregivers and sy oh what wonderful dedicated people we are and they are correct but they have no idea what we go thru.Because we place our LO's don't mean we don't love them,we are only trying to do what is best for both of us. We do deserve a life.We are conditioned to sacrifce ourselves .Some of my neighbors(Amish and mennonite) think it is awful that I placed Sonny(until death do us part).But almost have many childre and will pass their LO around every month or two.Sometimes the prro parent will say where am I going to live next. Has to be very confusing.I can't see it that way except to save the money.And you can't take your money with you.
The truth is no one wants to go. I went thru this with my father and we had to trick him to get him to the nursing home. He had been going there for daycare and my mother took him there as usual but when it came time to pick him up we were all there and were put into a room and I had to be the one to tell him. Very heartbreaking and he never did understand. He ended up crying for a week and a trip to the psych hospital and with the right medication he did adjust. I am fortunate because my husband is not fighting it. He understands what I am doing. If u do decide to place him it is good to do the respite for a while first so you and he have a chance to get used to that. My husband is very compliant which I know is a blessing. I went thru years of telling myself I cannot afford it but yhouniey is exactly right you cannot take it with you and the way I look at it it is worth anything and everything to save your life and sanity. I have also had to let go of what people might think. My mother kept my father home far too long but that was her decision but it nearly killed her. I am making a different decision. With this horrible disease there are no right and wrong decisions. It is whatever is best for YOU. It sounds selfish as hell but it is the truth. Your loved one is not getting better but you have a chance to save yourself and can make decisions to support that. I am placing my husband sooner rather than later because it is the right thing for me. Today at the suggestion of the alz assoc I am having hospice come out and evaluate him for their Navigator program. They will come and visit periodically and get to know your loved one. It is free and is just another way to try to get more resources and support. Don't know if different hospice groups have this but ours does. They will also come and visit him in the assisted living. I have also had to let go of the desire not to return to work. I would rather stay home and not work but again it is what I have to do to afford to place him, And it is far better than applying for Medicaid. There r no guarantees this will all work out but I know I need to keep moving forward. I have felt stuck for months feeling sorry for myself, having resentment when I see others living their lives and me stuck at home with him and constantly on edge when I leave the house trying to hurry home in case something happens.
If any one of those Amish or Mennonites, was taking care of their mate, especially alone, with the disabilities many of us experience here, they also, would be tired, sick, discouraged, depressed, and when the mate is falling down and never sleeping, believe me, they COULD NOT DO IT. Perhaps they have a family system to help, but if not, NO ONE CAN DO IT at that point.
When I get little hints mentioned about oh how hard to not have him home, (underlying that I am bad), I just relay to them what happened at the end part, including falling, violence, my broke up strong body from all the lifting, no sleep etc etc. and that usually shuts them up. It is true, NO ONE < NO NO ONE can get it until they have walked in our moccasins.
Wow, this thread is really hitting me hard. I too am feeling low these days and am confused as to why. DH is doing very well (way better than this time last year), he can be left alone, is happy and madly in love with me, sweet tempered. He goes to day-away twice a week so I have regular breaks. I have wonderfully supportive friends. What the hell is the matter with me? - that's what I keep asking myself.
So it is wonderful to once again be reminded that there are other people who really do understand and that what I am feeling is "normal", if you can use such a word in our situations. Even though I know better and try to live in today I know what the future of this illness is and it is not good. And even though DH is doing so well, answering the same questions 20 times a day can be tiring.
I know that I am the only one who can change how I'm feeling.
WOW!!Thank you for the affirmation that I am not the only one feeling this way, about my nonlife. I appreciate all the comments and really resonate with some of them. I have only dreamed of placing my DH. He is so healthy in every way except his memory, i dont think it could happen for many years. im afraid it will be too late for ME, then.
Ky caregiver - I can say exactly the same thing about my hubby's condition as you did.
The trigger for me was his rages just keep getting worst...a good friend of mind came with me to visit the elder nurse and when I was saying 'well I can manage' . He just lost it and told me to give up my 'pride' and admit he is becoming too much for me to handle. Well things took off from there and here I wait for the call from the veterans facility. I am actually planning what my life will look like in the near future.
It is too late to save our spouses,but we can save ourselves.Don't be a martyr.It's not even 2 mo. since I placed Sonny,my health has improved tremendously.I did not think I'd feel this much relief.If you want to survive,you have to make the decision no matter how hard it is ,to place them. They will adjust.
Like mothert, I wonder how I will ever get my husband to even go to respite care, much less an ALF or NH full time. Right now, he has difficulty accepting that he needs a caregiver at all, although he does recognize that I need time alone, he still thinks he can be trusted to be alone! Sunday will be interesting - it will be his first time having someone with him at home while i am in church. I know he isn't going to like it! Türschlusspanik - it is a word that exists in no other language but German (according to the book I am reading), and means "the panic of closing doors". I read that today, and thought - this is some of what is wrong with me. The doors are all closing around me, as I have less and less freedom and fewer and fewer choices. Being a caregiver is like being in a long dark hallway, and the door at the end of it is a long way away, and the light under that doorway is very dim! And I seem to be moving so very slowly toward that doorway at the end of the hall!
I have gradually worked it out for a caregiver. I started with someone to come in and clean,then I would leave for a few hrs. And it has evolved to the point that I do it a couple times a week. He doesn't really notice if they clean or not. Yes I feel that panic also. Good word!
bqd,I felt exactly like you do.never reaching the end of the hallway. It is an awful feeling.If I had someone stay with Sonny so I could go to an appt. or necessary shopping,I would feel so rushed to get everything done,if I met a friend I didn't feel I could take the time to chat with them.I couldn't get off the merry-go-round.Same, trying to shower.I was so sure he wouldn't adjust to the NH,maybe I was fooling myself that no one could care for him like I did.But he loves it and I'm not disappointed that I was super woman.
bqd, I just loved your door analogy. So fitting! I remember so well not having any breaks and the havoc it brought. I think everyone is a bit nervous about the first time they bring in help. For most it does work out and I do agree with the others that sooner is always better.
Some of our loved ones aggression or behavioral problems limit the help we can get. The only 'local' adult daycare would not take Lynn because of his aggression issues. Likewise I could not get in-home help because they told me they would not subject their help to Lynn's behaviors. Even our assigned social worker said she would not allow any of her staff to come in to try to help with personal care.
My goal from the day of diagnoses was to keep him home until the bitter end. I wanted to, but I simply could not do it alone. Where I could get no breaks, eventually it all caught up with me and my health suffered greatly. I waited until Lynn was later stages and until I thought I was ready to completely break. Actually, to be completely honest I would have probably allowed this disease to claim me too. It took my doctor telling me the next TIA could kill me, that at the rate I was going I could be dead within the year to finally face that I just couldn't do it alone any longer.
Now that I am not consumed in the 24/7 care I can think clearly again. How ridiculous I was thinking I had to sacrifice my life for Lynn. It is true that he would have taken a bullet for me, and it is true that I would have risked my life to save his.....but that's it right there, there is no saving him. I was risking my life for nothing....
Lynn's transition was very difficult, for both of us. But once he settled in, as they assured me he would, everything became better. I haven't abandoned him, nor forgotten him. I go visit with him every single day. More, he gets the absolute best of me. Our visits are all about making him as happy as possible. I am able to be the caregiver I always wanted to be. It has been a blessing for us both!!
It does not mean you love your spouse less if you place them. For me it was the most unselfish thing I ever did. I put Lynn's need above my own. He gets excellent care, far better than I could provide alone. He gets daily therapies to help him stay as strong as possible, to ward off atrophy and fight contractures. He eats like a king. He has social events to go to daily. And because I am rested, he gets the best of me every single day.
To me, that is far better than having him at home sleeping for 18 hours a day and raging at me the other 6 hours. If it is too early to consider placement, DO at least get some breaks. Not just 4 hours a week either. It's an every day, ALL day job, you need sufficient time to heal and recharge. I feel so badly for all of you ((hugs of understanding))
Over the past 4 to 5 years we moved from me doing everything to part time caregiver to full time caregivers to ALF. L never wanted a caregiver and we ran through a few. But she became used to having someone here and eventually depended on it. She has resisted expanding hours for them but has adjusted. As she gets worse she thinks that she has less need for them, but she doesn't like being by herself. So it is was a gradual thing for us. She has loved one of her caregivers so you may be surprised that something might work out.
I also had the advantage of a Judie's order that she have a caregiver. It cut through her many objections.
Bonnie - I also can relate to the doors closing around us. Just know, so I am learning, that you do eventually get to that light. With placement coming soon...I hope...I can see a door opening a crack and letting a little bit of light in.
Getting him down to the coast and the facility....now that's another story. He does know he will be going and which one...his choice...but he soon forgets. So the day of move will be very interesting. I have recruited a male friend to come on the trip with me just in case....5+ hour drive.
Best not to do the move on your own, especially with that long a drive.
One SIL and her husband will help with the move. We need a vehicle that can carry her chair, the rest of the furniture can fit in my Subaru (I think). But I will need them at least as much for the emotional support. The other SIL offered to come up (it is a trip for her) but we decided having too many people help would be overwhelming for L and that the other SIL should just visit in a few weeks.
Amber, I am glad to hear that you are not planning to make that trip with your DH without extra help. It is going to be an emotional trip for you and long trips are very hard on our LO's so I see a lot of potential for stress. The male friend could prove useful for both of you. (Its a pretty drive, though, I wish I were going with you!)
The day this thread was started was the day I 'blew' up. I forgot what hb was saying but my comment was: I should just put us in the car and drive over a cliff. He asked why and my reply was something like: ''what future is there? You have no future, just to get worse; I have no future especially since it looks like you will be going 20+ years like your dad. So my life is over, no future and so is yours." He looked shocked then quickly forgot the whole thing. Wish I could forget right now I see no future.
Charlotte, that is so sad, it surely hasn't been easy for you. Hope that there will be a bit of joy soon, to lighten your load. All the very best to you.
As I read these comments it brings back many of the emotions that I felt during the years of caregiving. When the diagnosis was confirmed I knew that our life would never be the same but what I did not know was how different it would be. Thinking that Alzheimers is just degrading memory loss is really the least of the issues to come. At some point you begin to realize that the brain controls everything the body does and as it starts to fail so does everything. Depending on when the loss happens in the brain the body changes coincide. When I read about all the different issues and reactions I can relate to all of them. I guess the main point that I am making is that yes there is an end. Unfortunately no matter how long it takes or what the final cause of death is. Now looking back I see thing is a much different light. My DW took 7 years to come full term and I was her only caregiver. After the diagnosis she never saw another Dr except our PCP. What was the point there was no cure and why try to live on false hope. I know in my heart I did everything possible and at the end I done the right thing an just let her pass on. We were childhood sweethearts and married for over 50 years but if I had to do it over again I would repeat it the same way. Now two years later I have created a life for myself and am much older a wiser. My expectations are much less and I can honestly say that I enjoy my new life. Happiness like love is a personal choice and while each person has to decide for themselves what is right for them, it is faith in themselves that will ultimately give them peace in the future. May God bless you all here on the website.