I want to ask my fellow caregivers for their Alzheimer's Disease advise. My 84 year old mother with AD has been living with us for 1.5 years and she has been declining. She and my family have had a difficult situation for a long time, but I managed to at least find a place in my home to protect her. She is in Stage 6, and I am getting pressure to put her in a nursing home. In the meantime, my wife wanted us to talk to a counselor about our feelings. This is a woman counselor who apparently helps people on Alzheimer's issues. I did alone, and then with my wife. My wife has less emotional impact on this, and she and the counselor were asking me what was giving me pause, and mostly it has been that I don't think my mother is at a mental state of degradation in terms of agitation, where she would readily fit in, based on the other tours I have been to. But they kept pushing me on my feelings about, and of course, as any human being who loves their parent is, I am sad about it. I told them how painful it was to watch your mother "die a little every day, losing her identity," and I couldn't help but cry a little. When the session was over, I had to go to the bathroom down the hall, because I had just got off work, and rushed over to make this appointment. When the female counselor was there with my wife, she asked my wife "are there any guns in the house?" I NEVER said anything that would inspire such an extreme response, and in fact, I am an anti-gun person. Now, I cannot tell you how offended I am by this insult behind my back. I have a right to be sad, I have a right to grieve, the ongoing loss of my mother, just like I would any member of my family. I keep it in check, I do my job, I support my family, I care for my mother, and I do a lot more. I am a healthy, responsible, competent adult. I don't think I should go to with my wife to a counselor, who asks me my feelings, to hear behind my back "are there any guns in the house."
The one time I open up face to face with someone, and this is what I get. It is not fair. I don't want to go back to someone who will disrespect me like that. Do you agree, or do you think I am making too much of this remark? I am incredibly offended by the callous nature of this comment.
All this doctor was going to do was trim my toenails!
These days "Are there guns in your home?" is a simple routine question to check off a list.
I thought of this thread when I checked No.
Bad things happen...especially when we are under stress...
Strength to you. And understanding...
I think you are well within your own rights as to how you felt about this comment.
Other posters have raised some valid points. But for me on the face of that remark.... I find it rather harsh. Now if she was trying to get information concerning your safety, your mother's, etc. I think it could have been worded differently, with way more tact. YOU have every right to your own feelings about it, too! Also,
she could have asked it while you were there.
Much Love & Light! Margeaux
My beloved MIL had very mild Alzheimers when we first we met. (She basically told her favorite old stories over and over again, verbatim. It got so I responded to her by using the exact same words and phrasing at the same pauses each time we had the conversation. (I began to think this was planting the seed in my brain for the same exact AD she had). My husband was wonderful with her. At the time we travelled a great deal but whenever we got home the first chance we got we drove out to spend the day with her. I don't think he saw her AD as a form of dying before her time. She was just a different person/different Miriam as the disease jumped to another level and as it progressed; and he accepted each "new" person and the new limitations as this "is" his Mother Because all along there was no doubt the person, all that made her unique and which made her "Miriam" was there always; right up to the day we had to return from our much anticipated Christmas in London (our first Christmas holiday away ever!) because Miriam had pneumonia and was in hospital. (The NH staff assured us when we visited her two days before our departure, that Miriam was fine and that she just had the sniffles, she would be fine. We were advised without certainty in anyone's voice, that we should not cancel our plans, Miriam would be fine and we should just go ahead with our trip to the U.K. The call from them to come home came in the middle of the night UK time only four days later. Miriam finally succumbed to a hospital virus that finally sent her into a coma but not before she saw Bruce and was once again aware that her son was there for her. That Jeffrey is all you should plan to do. Be there for your beloved Mother whether it's for ten weeks or for ten years, whether she's at home with you or at the closest good nursing home. She is your Mother and she will live out her life being your Mother. Ain't nothing going to change that; no damn disease can rob us of our mothers and our dads. Good luck to you. (And please do consider starting a blog for men and report that news back to this site). I will pray for the three of you.
P.S. I am odd, I admit it. But re the gun question: My immediate reaction was that the therapist thought your Mother would get her hands on the gun. It's weird yes but I've got to say it's from being stuck in a gun loving, gun toting state like Florida and hearing too much second-hand local news. (I don't ever put it on but my stepfather does. He and I just don't see eye to eye. Actually my brother in Ohio just said the other day in reaction to a "story" I reported to him. "I'm glad there's no guns in your house."
Carol
I can tell that this whole situation has you all torn up on the inside which is understandable. Here's what I see and I'm going to make an outline of this whole story so that I cover all of its parts.
1. Your mom's doctor says she has reached Stage 6 of Alzheimer's.
2. This is the stage of severe decline and means there is need constant supervision.
3. Frequently this requires professional care like a nursing home which is what is being proposed to happen.
4. Your emotions are dealing with the daily loss of the mother she used to be and the anticipatory grief of what is coming ahead. That's normal.
5. You are feeling pressured by your wife, your mom's doctor, ______ ? to place her in a nursing home. This increases both your sense of loss and raising your anxiety level over the whole thing which is a normal response to increased emotional pressure.
6. At the same time, what is giving you pause from placing her in a nursing home mostly comes from your not thinking that your mother is at a mental state of degradation in terms of agitation, where she would readily fit in, based on the other tours of the nursing home you have been to. I can understand your feeling this way and that's normal to feel apprehensive about making such a major change. At the same time, I can see where the doctor has a valid point from the perspective of an objective third party professional who is looking at the total picture and has seen where this is heading because of seeing it so many times.
7. However, they kept pushing you about your feelings about this and like any son who loves their mother, you are sad about it and you told them how painful it is for you to watch your mom die a little day after day loosing more and more of her identity and understandably it made you cry a little with is normal to feel that way.
8. Then came the big question about guns in the house which seems to have been the straw that broke the camel's back. Everything after that appears to have gone downhill big time!
9. So, I have to ask myself what is going on that I'm missing?
I now think what I'm missing is that the presenting issue of feeling hurt and insulted by the guns in the house question is but the tip of the iceberg of the whole thing which I think you need to go back to another therapist to continue to work on and through which is going to take some time.
Correct me if I'm wrong, but my perception of this emotional puzzle is that you are deeply torn between accepting what your mother's doctor says your mother needs and and how valid you feel his observations are.
Why? Because for you to emotionally accept the doctor's opinion would mean another major concrete emotional turning point about your mother's declining health which is very hard to accept.
That's a normal emotional conflict to feel at this point while your brain awaits your heart to process the medical information.
It's basically a conflict between emotional/mental disbelief vs emotional/mental acceptance of your mom's new normal and who knows how many years that could go on?
It's like having to accept a death which has no closure yet because the person is still physically alive although who they are on the inside is dying away.
I saw this happen overtime with my mother and her vascular demnetia, but I've seen this taking place quicker with a sharper decline with my dad's alzheimer's. My mom's health had vascular problems with strokes and it ended up being a stroke that caused her death in the fall of 2013 at age 82.
However, my dad, at 89, does not have any vascular problem like that. So, it is possible that his life in the body could last way long after his mind is completely gone.
He cannot handle any questions now about anything other than how do you feel. Since my step-mom died this past May, his talkativeness has rapidly decreased; he's been diagnosed with Parkinson's and does not get around all of that well except with a walker.
His sister had Alzheimer's too and died this past June at age 84. He has lived longer than anyone in his family tree. A lot of that I think has to do with both genetics and how well he took care of his physical health.
But, the sad truth is that at some point dad want be there anymore completely like he once was. I can't change or fix that. All I can do is make sure he is safe and cared for.
I've lived several states away from him for decades. In 2001, my wife's health failed and she went on full disability followed by the same thing happening to me in 2003 and at that time our boys were still in school, but they are now both out as of this past December. So, we have not been in any position to be able to just pick up and move 350 miles north.
When my dad learned that I was starting to have my hands full with my mother in 2002, he changed POAs from me to his step-daughter. We are in constant contract concerning his care with 24/7 caregivers in his house that is being paid for mainly by his long term care insurance policy, but it does not have as many years on it like my mother's long term care policy had and she did not use all of her years up.
I've been on this site for several years and I think that I just finished typing my longest post ever.
I sure hope this helps you feel validated and supported.
You have some work yet before you to do, but eventually you will get there. I would possibly just find another therapist to take the next step with in the process.
You may be a little like me and find it easier to open up to a male therapist about where you are emotionally, where you see yourself as needing to be and asking for supportive help in getting there.
I've been in therapist now for several years and while I appreciate the female therapists that I had earlier, I find this man much easier to talk with and have met with him for the longest number of years. Since, I have bipolar disorder and other problems, I will be in therapy for the rest of my life.
You, on the other hand, will not need that much therapy, I'm sure. Take care and keep in touch.
I also agree that men are treated differently as caregivers, in general. A good friend of mine is a caregiver to his severely disabled daughter who is in her 30s. People treat him differently than they do the mother (they have shared custody).
It's natural for you to want male input. There are men in this community and I hope more of them speak up. I'd love to have you keep in touch with us. I think that a male blogger may be helpful to you, as well. If you want to get in touch with me I can help you find one.
Good luck,
Carol
Veronica I appreciate you taking the time to comment. I think the challenge I face from women I am working with is summed up by your comment: "Men do not show their emotions as readily as women and she may have felt that as you became tearful that you were more deeply depressed than you were admitting and asked the question of your wife to reassure herself there was no iminent danger to you." This pretty much says it all.
There a quite a few judgments and suppositions as to how much of my time I am spending caregiving, etc., which I think I am getting because I am a man. This is making me uncomfortable. In fact, I personally do the majority of the caregiving at home, but I don't think I should have to defend this, simply to get an answer to my question. I gave an awful lot of detail to provide context in my question; I don't think I need to describe every aspect of how I handle every day to get respectful comments from the caregiver community. Apparently not.
I have one last thought to share with you to consider. I would like to believe we will conquer Alzheimer's Disease soon. But the ongoing struggle indicates that this will be a long, long battle. Two-thirds of the victims against this cruel disease are women. But there are many men as well. We will never be able to respond to this tsunami challenging our generation by only expecting women to carry the load, especially as the years go on.
The thinking that men are not allowed to demonstrate our feelings on seeing the suffering of a loved one, and that it is somehow "not normal," is very troubling. The automatic supposition that men can not do enough caregiving is the thinking of a community that has already prejudged what is happening, not a community that is sharing this struggle together. I would urge the women in this community of caregivers to consider what the future will be if those men who step up to lead caregiving roles are discouraged. We have a serious struggle for this generation. We can't do this with just half of us involved in the struggle for the safety and dignity of our loved ones.
What this has given me thought to is creating my own blog for other male Alzheimer's caregivers, so that men have a place to go and talk to other men who do indeed have feelings, hearts, and souls. Thanks again for your time and comments, and I wish you the best in your efforts against this cruel disease.
Since this person is called a transition counselor and not a therapist, I'm going to assume that she has little training. You might do well to find someone with real credentials as a family therapist. Lastly, who is doing the day to day caregiving, you or your wife. Unless you've quit your job to stay home and change the pampers, please think about how much you're asking your wife to do.
You have given off other clues as to the turmoil you are going through and I don't really know if TC (transition counselor) is up to the task put before her. (The guns remark is one indication). For instance, you say: "She (your Mother I presume) and my family have had a difficult situation for a long time, but I managed to at least find a place in my home to protect her." Those are strong words; you found a place in your home to protect your Mother. What could she have done (or any of our Mother's?) to warrant this need for protection?
That your wife and TC were in cahoots seems obvious. They both wanted you, the loving son, to have to explain why you don't wish to put your Mother in a nursing home. Not wanting to send one's Mother away to a nursing home to me is the normal position. I saw it years ago from my own husband, and I helped fuel his wishes by being adamant we could take care of her in our home. Boy was I wrong! (On the second day I was so worn out I had a sitter come in for four hours to help me. I did not leave the premises. When her shift was up as she walked towards the front door she started explaining that it would do no good to call the agency as she (this sitter of 4 hrs, experience) wouldn't be available the following day, and threw in that she had diarrhea something terrible to make sure I understood).
Surely your wife has heard your views on this before. They are views she probably would like to change. Those one and a half years obviously felt a lot longer for your wife than for you, and it makes me wonder what it is about having her MIL in the home that makes your wife want to ship her to a NH, and to get you to a TC. You don't mention your ages or how long you've been married. Perhaps you hadn't been married long before your wife had to already share you with your Mother. In any event before you went back to the TC (although I don't see why you would) I would make sure that you and your wife are on the same page as to why you don't think it is time for a nursing home. I totally get your reasoning, even if someone says the stage she's in makes her ready, as I feel a lot like you do also in regard to my Mother, but for different reasons and of course a different situation, as I am the daughter. In my situation my Mother always favored my brother, showered him with gifts, and gave him money when he needed it. She was always quick to explain that I could always take care of myself, I was strong and independent and I didn't need her help. If saying that made her feel better then I imagine my silence just helped it along. Now she's living with my husband and me, we have used up completely our retirement funds because of surgeries my sweet husband has been through that made him also have to prematurely end the career he loved. We could use help financially but my stepfather won't open his wallet to even bring out his license (and the moths that live there) when I'm around. But he feels and says nothing about taking over my home, and in effect turning my beautiful home into my Mother's nursing home. Yes, being a caregiver is tough but like you I don't want to see my Mother go to a nursing home where her every little care is not met by a loving and familiar face.
Are you feeling pressure to place your mother in a N/H. Many people do feel very guilty about having to do that to a loved one. If it is in the best interests of the entire family and the elder will be well cared for then it is in the best interests of everyone especially as the surviving family will have to pick up the pieces and carry on after the loved one dies.
The therapist may have not been in pratice for very long and could have misread your reactions or perhaps she just is not the right therapist for you. the first meeting is always a good time for both client and therapist to size eazch other up and decide if they can work with each other. Try someone different if you don't want to go back. Go alone or with your wife whatever feels comfortable to you.
Does your wife mind caring for your mother? did they have a good relationship prior to Mom's illness? perhaps she is simply worn out and feels she is always stuck in the house with MIL while you get a break every day going off to work. This sounds like a simple reaction to an inappropriate question but I suspect there is more behind it than that and it may be helpful if you feel like it to share more background. We are here to help. Blessings
Unfortunately, we no longer live in the day when psychiatrist do any counseling. They just hand out medicine often based on the therapist's input, but not always.
Take care of yourself.
Jeffrey, maybe you came across to the counselor as depressed more than sad and that's why she made that comment. Or maybe that is part of her training - to think suicide until proven otherwise. One session often isn't enough to know.
I don't mean to imply that anyone should give up counseling. But I do know, from the experiences with a loved one who suffers from major depression, that counselors and the people that they work need to be matched. That doesn't mean a counselor is bad if the match isn't good - it just means that personalities or techniques or a combination of the two aren't working. As I said above, one session often isn't enough to figure this out.
Anyway, Jeannegibbs, as always, made some valid points. There's never any doubt when she answers we need to think what she said.
Carol
Awful things happen which at the time are unexpected, but afterwards anyone who could have prevented them by being more alert to remote possibilities will a) feel terrible and b) often get blamed. So they check. That's all.
If I'd overheard that remark, I think I'd have answered the counsellor for myself, ideally keeping my sense of humour. Something like "no, and I wasn't thinking of cutting my wrists or stabbing anyone, either."
But I feel for you. With the stress and sadness in your life at the moment, you must feel very tender all over and I don't for a second blame you for feeling offended by this the counsellor's question to your wife. But don't stop going either. Apart from anything else, you should tell the counsellor how you feel about her lack of candour with you - air it. You'll feel better.
I do think that even if you decide to change counselors you should put this topic to rest by one more visit to discuss the question and your reaction to it. You may decide, "She's a bad counselor." or "She's a jerk," or "Oh, I see where she was coming from," or something else, but I don't think you should let this fester. Opening up about your feelings is necessary in counseling; you shouldn't feel disrespected for doing so.
Yes, this is having less of an emotional impact oh her than on you, because it is your mother that is the focus of concern.
Evidently, your mother's doctor has diagnosed her as being in stage 6 which is the stage of severe decline and means there is need constant supervision and that frequently requires professional care like a nursing home. She's in the stage where agitation and wandering can happen at any time.
Thus, I don't think the comment about are there any guns in the house had anything to do with you personally. I think it was a precautionary question the counselor thought needed to be asked given the stage of Alzheimer's that your mother is in. Remember, we are talking about the disease and what it does to people. Thus, you have to cover all of the possible bases.
I think you need to continue to work through your feelings with a therapist. Keeping them all bottled up is not healthy or helpful. It sounds to me like your emotional circuit board is overloaded and needs some down time.
This is a tough time right now with the decline of your mother and your anticipatory grief which is all part of the process. You will make it through this.
Take care and keep in touch.
Why is that question offensive? Every time I see the psychiatric nurse for depression she asks if I have had thoughts of harming myself or ending my life. I have never been suicidal in my life, but I am not offended by the question. It seems appropriate to me. I am not suicidal. You are not suicidal. But some people are.
Of course you have a right to grieve. Mourning for the many losses we go through as our loved ones decline is normal. Mourning isn't the same as depression. But persons in mourning can also be depressed. And persons with depression CAN (but not necessarily do) have suicidal impulses.
I can't figure out why the question seems disrespectful to you. I think you should see this counselor again and ask her to explain the question she put to your wife. Hear her perspective before you throw in the counseling towel.
I'm so glad you wrote - and no I don't think you are overreacting. I'd be furious, too. It could be that the counselor was just covering all the basis to protect herself, but from what you said you are understandably sad and you should be able to say that without the counselor thinking your are suicidal.
Some counselors are better than others. That's just a human fact. Also, some are better with one type of person and others are better with a different type. My suggestion would be that if you and your wife seek more counseling (and that is a find idea) you find a different counselor.
Meanwhile, please keep coming back here for support.
Take care,
Carol