It seems to me that there have been a lot of posts in which people have been critical of themselves lately. It's so hard not to be. I yell at my husband even though I know he can't help whatever he's done that annoyed me, and there is a long list of those things he does. He doesn't answer me when I talk to him. He does dumb stuff on the computer or phone that I end up having to fix. He tells me how to drive constantly, although there is definitely a reason I am driving and he isn't. I could go on and on.
I see a psychologist every other week to talk about my feelings, and a major one of those feelings is guilt. I yell at my husband, my house is a mess, I don't always fix good, well-balanced meals, I cry and let my husband see how upset I am. Again, I could go on and on. The last time I saw the psychologist, she told me that she didn't think I felt worthy of having good things happen for me. She said she didn't think I valued myself apart from what I do for other people. (You may remember that I also take care of my sister.) Her suggestion was that I ask some friends or family members what they thought was valuable about me. This was supposed to be characteristics that they valued, not things I did for other people that were valuable. In other words, my husband's telling me that he loved me because I took care of him didn't count.
This was very hard for me to do. What if they couldn't think of anything? But today I emailed a few people and asked them. So far, I've gotten three emails in return, and they've been fantastic. I cannot recommend doing this strongly enough! I know we are supportive of one another. But it makes so much difference to have someone who knows you personally and who sees your best and worse say nice things about you. Next time you find yourself being really hard on yourself for whatever reason, try it!
Janet..You are dealing with the worse possible disease in the world. It is impossible to be the person you would like to be. AD challenges every strength you have, and there are no rules when it comes to caregiving. You can only do the best you can and that has to be good enough. They key is to adapt to the circumstances, and to comfort yourself with the knowledge you have, and the only time you should have guilt is if you do something intentional. One example can probably explain this: My dw would refuse to eat, and her weight dropped to 95 lbs. I know that 3 meals a day is great, but I was fortunate if she ate 1. I learned to cook, and found that I was throwing most of it out. The guilt I had about not feeding her properly consumed me, and I blamed it on my inability to make savory meals and get a balanced diet. Then I discovered that she did not like the taste and texture of any food. Fortunately, she liked an open face turkey sandwich, mashed potatoes and baby carrots at a local restaurant. That has been her meal for the past two months, and she is now up to 105 lbs. I guess I could feel guilty about not feeding her properly, but at this point, I am happy that she is eating something she likes and that she is gaining weight. I had talked to her doctor about this, and he prescribed Megace, but he then told her directly Audrey, you need to eat. Somehow, that registered and she now brags that she is getting fat because her doctor told her to do it. I could take a lot of criticism because her diet is not optimal, but I need to realize that I am doing the best I can. I could put out a seven course meal, and she will not eat. But get the turkey and she devours it. Am I being negligent?? Should I beat myself up and feel guilty because she won;t eat what I make?? Is it my fault that this is happening?? Can I do anything different?? Well, I am always open to criticism, but I wonder what other people would do in this circumstance. I tried to google it, but there are no answers. Yes, it breaks the normal expectations of human life, yes it makes no sense, is not logical, is not healthy, should not happen, etc....but the reality of it is that I have to deal with it the best I can. Again, I can only do what I feel is the best course of action. Guilt only comes into play when you have a choice, and you intentionally make the wrong one. Guilt does not exist when you make the only choice you have. All the things you do in caregiving teaches you what is effective and what is not. For some, yelling will work. For others, it will precipitate a catastrophic reaction. This is a disease where you learn as you go along, and adapt to what works for you. I have learnt much from watching how my children handle their mom. My son in particular is fantastic with her because he does not react..He calmly will talk only after her rants and raves...he does not argue or discuss with her. Since I tried that, it works!! Do not argue with AD...it will fail. Janet, your best characteristic is that you are a caregiver (not a caretaker). That in itself is sufficient. You do have the option of leaving, but you stay because of love and commitment. That is noble and honorable. And I just guessed about the tatoos.......
Janet--these thoughts are a little off the topic you posted, but one thing that jumped out at me in your list of "no no's" was yelling. Frankly, I feel that yelling, letting off steam, crying, etc. occasionally is human and is keeping me sane. It is a release of all the tension and stress of the situation; I certainly don't feel guilty about it and you shouldn't either. As Frank said, we have a Herclulean task at hand and I bet EVERYBODY who is unfortunate enough to be in our shoes has let loose at one time or another. It is to be expected. Now, if it's a daily occurrence, that may be a bit much, and I would be concerned about my mental state if it was happening that often. But occasionally--well, I bet even Mother Teresa would have been acting the same way if she had this role!
Another thought that occurred to me is that you seem to be expecting an awful lot of yourself. With both your husband and sister to look after, you need some help. If you would be able to hire an aide several times a week, in addition to giving you respite, they could clean the house and prepare meals.
The way you have described your emotions reminds me of myself when my husband was in the early stage. It wasn't as much about my self image as the fact that I simply wasn't getting enough (any) respite and I was overwhelmed. That was when I enrolled him in daycare and things improved tremendously. It doesn't have to be a day program, but more respite for you, if possible, may work wonders.
I doubt that I would take your psychologist's advice for myself and ask people what they thought was valuable about me, buthis weekend, I was talking with my cousin, and telling her that I was looking back on my life with Sid. I was realizing that all the good things were past. My life was over. I really meant to say that my life with HIM was over, but before I got the chance to amend my statement, she pointed her finger at me, and said, "Don't you EVER let me hear you say that your life is over. You are smart, attractive (well, in her eyes, I guess), young (relatively speaking), creative, and have many good years of living ahead of you."
We sometimes lose sight that we do have value OUTSIDE of our roles as caregivers. Thanks for starting this topic.
I wasn't really talking so much about myself, although everything I said applies to me, and I was describing what I've seen in many posts here lately. I agree it's very hard to ask people what they think about you. But, if you do, you will probably find, as I did, that it helps you see yourself more clearly.
Phranque, remember that Mary75 is an author of fiction.....<grin> However, in this case she wrote non-fiction! I agree with her 100%!!!
Marilyn, you are right that we HAVE to let our emotions out (or we would all have high blood pressure and heart attacks from the stress of keeping it in)...The trick is to do it in the bathroom with the door shut, or go outside and blow, when we can. Sometimes we just react. And that is okay. They forget anyway! <grin>
Janet, I love this discussion! Thank you for starting it. I am fortunate to have friends who constantly tell me that I'm doing a great job of taking care of my husband, and they don't know how I do it, with what I have been through. I try to tell them that I do what I have to do each day and keep on keeping on. Their praise sometimes embarasses me. I'm human and make mistakes. I want what is best for my husband, and know that he will be in a better place AFTER than he is now. Sometimes I feel guilty for feeling that way.
The fact that you not only have your husband but also your sister (and Joan has her father as well) shows you two do double duty in the caregiver department. You both deserve praise for holding it together....we all here at Joan's are here because we need help, advice and a hug occasionally BECAUSE WE ARE CAREGIVERS WHO CARE. That alone makes us special.
On another note, with Christmas up and coming, I seem to feel more love for my friends and acquaintances and this year when they ask if there is anything they can do, I'm going to give them a list and let them choose a Christmas present for me: 2 hours of time to go somewhere while they stay with my husband; take my car and get it washed; run to the grocery store for the three or four items I forgot; go to pick up dinner that I can order take out from Olive Garden one night (with me paying of course); and a few others.....People always say "it is better to give than to receive" and I want my friends to feel good! <grin>
Phranque, you are wrong. This disease is also about us. We are half of the whole and you can't treat one half without treating the other half. It IS about us. We are the CAPTAIN of that ship we are keeping afloat! And don't you forget it! You are important!!!!
I realize that I am ON this ship, and will keep it floating as long as I can, but I intend to swim after it sinks.....I will be a good captain, but I am wearing a life jacket and I will not drown.
Ships have "LIFE" boats tied to the side, for people who chose NOT to go down with the ship. Everyone is expected to climb aboard and NOT go down with the ship when it sinks.
I know for a fact that Phranque's life boat will be filled with goodies left over from when he outfitted it last year. He was going to tie onto the cruise ship and be towed along behind. Talk about a party boat!!!!!!!!Yeee haw!!!
I don't know about you all but I feel like the definition of being a wife has changed. I am still Mrs. DH but it is not the same as all the other Mrs's out there that don't deal with this disease. Phranque, I know exactly what you mean by being in the ship but not wanting to drown.
Mary, the psychologist told me not to ask for things I do (i.e., taking care of people) but characteristics. I guess the idea was something along the line of "what makes me me". Those characteristics undoubtedly contribute to how I take care of people, but they were there before the care-giving began and will be there when it's over. Some of the responses I got were that I'm smart, I'm humorous, I'm persistent, etc.
What a great thread--I especially liked Phranque's comment that he wants the ship--when it sinks--to go down gracefully and with dignity. Beautifully said. But does that mean the captain goes down with the ship too? I'm still quite ill and worry that I won't have the strength to continue the journey.
Any suggestions on how not to beat yourself up? I just received a call from the ALF where my husband is a resident. He hit another resident, this is the 2nd call I have received in the last 2 weeks. Granted the resident had a hold of him & he was trying to get away, but every time this happens I feel so responsible...I know I can not control what this disease does to him, and tell myself it is not my fault, however, I still can't help feeling somehow I should be able to control him. He is 20 -30 years younger & stronger than other residents & much stronger...I fear he will hurt someone. Each time this happens, I consider bringing him home...maybe it would be best. I am just so worn out mentally from worrying what he will do next. He hates being changed, & hates water period, so what do I do?????? Besides sit here a cry.
Kadee, My husband has been in ALF for a year and a half. He is end stage but still mobil. I got these calls constantly for the first year. He did not attack the residents...he hit the staff. Last time he was pushing rolling chairs at everybody. What helped me was when my children reminded me that he was there for that very reason. They also reminded me that that is what I pay for...for them to handle this type incident. I always go and try to calm him when he is wound up, but I can't fix everything. I struggled with this type behavior for so long when he was home, I can't do it 24 hours a day again. So every time something like this happens it is a reminder to me of why he is there....I go see him every day...but not 24 hours a day.
Kadee, Grannywhiskers has given you some very good advise. We are not responsible for what husbands, children or other people do. We have enough trouble keeping ourselves in line.
I told myself half the night & all day that I was not responsible for my husbands behavior due to dementia....sounded real good, until I received a call at 4:30 this afternoon that he had kicked another resident. The resident tried to hold his arm, he doesn't speak anymore other than gibberish, I expect that is the only way to get away is to be aggressive. The Director of Nursing, told me since this had been the 2nd incident in 24 hours he would have to either go back to the Behavior Clinic or somewhere, they would not be able to keep him. I told her I would not send him back & would just bring him home. Before I left, not really knowing what I was doing, I was not prepared to bring him home. I received a call from the Director of Well Being, I told her the same thing. She does not want him to come home, we are going to try keeping him in his room watching TV, during the time period he is aggressive, which is from 4:30 to around 8:00. I will be going to sit with him during this time. The State does not agree with this method of care, however, I am signing a paper that this will not be confinement for him. Also, calling the doctor for an increase in medication. The ALF really doesn't like to increase medication, but, they are dealing with a 59 year old man, so they will agree.
Kadee when my husband was in a dementia ALF and acting out like only a person with FTD can increasing his medication was the only way they would keep him. That was in addition to my hiring a private aide in the evening.
The addition of Risperidone took care of the hitting attempts toward staff, but there was one more incident the other night when he wanted to get out and was stopped. This was in the evening around the time visitors were arriving for the holiday open house. I wonder if there was too much going on for him to handle.
This seems so simplistic-but it worked. For a while my husband was determined to get out of the facility. He actually did get out the front door several times even when wearing a wander guard which set off an alarm. He tried getting out of windows by moving furniture. DH had always been a very law abiding person. We made stop signs the same shape, color and size as the real ones and put them on all the window. Added no exit to the signs. He never tried to get out that way again. There was a key pad for exit and fire alarm key pad side by side at the front door. He would spend hours punching numbers into the fire alarm box in an effort to get out.
Thanks to everyone for your comments. I cannot really afford to hire someone to sit with him, so I will be going from around 5:00 till 8:00. His sun downing started after dinner/supper. He walked so fast up & down the halls...he didn't even realize I was walking with him. He would go to sit down & if I had not been there he would have been on the floor, then back up within 2 seconds. He would run into things not even knowing he was close. I am sure if anyone really got in his way, he would have walked right over them. I finally was able to get him to his room, I sat him in his recliner, and he sat there whimpering until he fell asleep. Then I am sure he will walk again half the night. I am calling the doctor first thing Monday morning...the nurse is also calling.